blogzilly

Additions and Subtractions

2012-02-29T12:35:00.002-05:00

While I wrote a blog that is in response to some of the comments and personal notes I got in relation to my post about taking Bennett out in public and family outings in general, that can wait.

Instead today I'd rather link up to Mission: iPossible, even though it seems to be Eric Olson Week on blogzilly, but that's fine with me. Why not?

Today I added him on our Who We Are page and announced him as an official contributor, and wrote a little bit about what that means over there.

And yes, it is, in fact, true, that thing I mentioned briefly on Facebook. I did take away all meat and dairy products as well as almost all processed foods from my diet. The things I now consume are radically, radically different. Been that way since Friday night.

I'm a bit more hardcore right now than I intend to remain. I will go back to having some bread and pasta at some point, maybe, in the future, as long as it is free of certain things and organic, and I may re-intro some swimmers in moderation, but for now its a complete elimination of all that shit, though I am allowing an occasional flour tortilla right now in a pinch only because of necessity while I wait for a non-flour alternative to show up. Considering what I WAS consuming? I can live with that ONE item still being there...for a short while.

This makes it I guess Day 5? I don't miss anything. I feel...particularly weird. I'm eating a lot of food though, all of it good. I feel leaner in this short of a time frame. I feel more...vibrant? Is that the word I am looking for? Energetic? Definitely more alert and alive. Everything tastes different. It is freaking crazy. Much more on this later, as I learn more about it and learn more about how it is affecting me.

It is good though. It is probably the best thing I have done for my health overall since I stopped smoking. Maybe ever.

OUT.

Fear, Of Self

2012-02-25T13:45:00.007-05:00

There are times when I read another post of one of the Brethren or Sistren (mostly Sistren) on my Blogroll and I start to comment. And I type. And I type some more. And I keep clacking away. And then I sip some tasty beverage. And I continue typing.

Before I know it, the thing takes on the shape of a short novel, and I realize I am in danger of Blogjacking. Not even danger, really, I am actually DOING it, and the only reason it isn't considered Blogjacking by the owner of the blog is because I happen to be in good standing with said owner.

But I made a rule some time ago after going crazy on SingleDad's blog. Actually it's more of a guideline than a rule, that I would try to curtail that shit. SO, when I hit a certain paragraph count, I am supposed to stop, hit CTRL + A, then CTRL + X, then open my own blog, hit New Post and then hit CTRL + V and start writing a blog entry here.

Which is exactly why you see what is here, unfolding before ye.

I was reading the blog of one Mr. Eric Olson, who writes Pressure Support, about his son Liam. Eric and I met through Mission: iPossible, well...before that actually. He and I were both one of the original Marissa's Bunny contest winners on behalf of our kids, and as it turns out, when Heather asked me to be a part of a restoration project that ended up becoming Mission: iPossible, I got to know Eric as his family was one of the remaining families from that original 'Winners List'.

As one of the few Father's, he stood out like a sore Socket Wrench. So we've since hit it off. Even though he is a New England Patriots fan. But for this I can be very forgiving. Besides...Pamela, another from the list of 'The Twenty' on the Recipients from Mission One, is a devout Pittsburgh Steelers fan, and I love her and her son Joseph, too.

So I am reading his most recent post, the one about Good Questions, Bad Questions, and the title is making me consider busting out some old Led Zeppelin on my iPod and listening to it, and I come to a startling realization about my own son.

A realization that is, quite frankly, on the borderline of kind of...dreadful.

I never take Bennett out in public. And I mean N-E-V-E-R.

I avoid it at all costs. I go with him to family functions and stuff. Parks and Recreational type places, where there is a LOT of buffer between him and other people. But to the grocery store and the like? Nope. Toy store? Nope.

I take him to NOTHING.

Holy shit. I had no idea how isolated we've become. We do not go out as a family. WHATSOEVER. Going out to dinner is, simply, out of the question. The likelihood of Bennett acting out, or throwing his food across the restaurant if something goes wrong, while not HIGH, is still high enough to where Jennifer and I both do not risk it.

There is also that chance, that very real chance, of him having some contact with another child and not knowing how to react if the encounter doesn't go quite right. And I do not know what I would or should do in that situation if Bennett were to strike the child or lash out.

It's fear really. Plain and simple.

But am I doing the RIGHT thing? Am I OVERLY concerned? OVERLY paranoid about it? Am I hurting his development? Should he be exposed to the environment anyway, and should I let chips fall where they may?

I read another friends blog in the last couple of days too, and that also got me to thinking about the months ahead. In Heather's post, she was showing an average day in her California neighborhood, with her family hanging outside and everybody sort of doing their own thing, visiting and playing. Zoey was outside too, and being a 'part of it', but she was also NOT a part of it, and Heather had some things she was wrestling with over that.

I wasn't sure what to say there, but only because I could understand the internal struggle and it made me sad as well. Obviously Bennett's challenges are very different than Zoey's, but parental concern over how our kids will handle their own unique set of circumstances are similar across the board, for the most part. And most of the time that's true even of ALL kids who have major life hurdles to overcome and the parents who care for them.

Over the next several weeks, as the weather starts to warm up, we will have something neighborhood related to be concerned about, too.

In our little development, for example, come Spring? We will have to most likely have to keep Bennett contained indoors a lot, while Carter is outside. All because of what I said above. And in addition? Because Bennett, when he is outside? He bolts, sort of like, and I hate this analogy but I have none better, but like a dog that is not well trained.

But what can I do, really? Put a rope on him? How do I keep him close to me? How do I stop him from running out in the street? He has ZERO concept of the idea of what a car even is, let alone the fact that one could crush him. But when he gets out there, the kid just wants to fly.

Then when you try to run after him and grab him to stop him just to try and protect him he starts a major freak out. It becomes almost nightmarish sometimes. If we had a fenced in yard it might be different. Not in this neighborhood. The HOA requires that any fence be...get this...IRON. Yeah...we weren't expecting a Special Needs child when we moved in, NATCH!

Yet another thing to try and figure out I suppose. And like everything else, there is an answer, somewhere, hidden between the layers.

I just wish it were easier to determine which of the answers were the CORRECT ones. When it comes to the decisions we are making regarding Bennett, or even Carter for that matter, it seems like I spend half the time making a choice, and the other half second guessing it.

There really should be some kind of manual for all this shit. Not that we'd actually READ the thing, I know. But anything would help. Hindsight is helpful and everything, but FORESIGHT would be even better, don't you think?

OUT.

Back on the Horse

2012-02-21T13:05:00.003-05:00

I showed up over at Fruitless Pursuits today (trying to get back in the groove a little). Inspired by a link sent to me in the comments section of yesterday’s blog by The Scott Family of Our Scott Spot (thank you very much) of a bunch of Muppet Cupcakes, today’s post is all about some very cool cakes.

And saying goodbye to them...for health reasons.

Elizabeth would be very sad.

OUT.

Pimp

2012-02-20T12:00:00.010-05:00

Forgot to do some necessary pimpage.

I posted over at Mission: iPossible on Friday that we have started accepting new applicants for Mission 3. More than that, I essentially just started a new process that allows the overall application process, because we are taking this whole thing fairly slowly, to just remain open-ended.

Why the snail's pace? Mainly because it is still a matter of only being able to give it so much time in a day. I would love it if I were able to make it a full time responsibility, I really would. It would please me to no end to somehow turn it into some kind of career.

But for the time being it is not, and I had to admit that to myself and the best way to do that was to segment it for the time being by suggesting that we keep it formatted by keeping quantity of iPads linked to the actual Mission number. So Mission 3 would have 3 iPads, Mission 4 would have 4, 5 would have 5, etc.

Heather was cool with it, as was our other Super Secret New Member that I will be revealing shortly on the MiP site. Need more people though. Want to turn that into more of a Contributor-type site. Kind of like what Fruitless Pursuits is...but for Special Needs communication.

Which reminds me. How remiss have I been THERE of late? Holy Crapazowley! That's another commitment I need to re-energize. And I will. As I've hinted, The Bennett Situation has just started to recede some, like a low tide, so the pressure is starting to ease up.

I will say this though, and it baffles the shit out of me. He walks in the other day, coming home from school, Bennett I mean, and blows my mind by (sort of) singing 'Head, Shoulders, Knees & Toes'. And I mean, nearly the entire freakin' song.

Pieces of my jaw still litter the foyer. And he still can sing it, in Benglish obviously, fairly often.

But it takes HERCULEAN effort, still, to get him to say 'Hi, Daddy.'

WTF!?!?

I say to thee that it continues to vex me, however, that, every day, when I say 'Bennett, what's your name?' he says 'Ben-Ben.' and then I say 'Bennett, what's MY name?' and he says 'Kee-Ko!', which is the name of our Home Health Aide.

Baffling.

I know.

I obsess over STUPID SHIT.

On Danielle's blog, she showed a developmental chart, and I was looking at it this morning. And while I feel it is important to jump up and down and high five and celebrate and be giddy as school girls about all the great things Bennett can do, because I am very excited about these things, and I do always count my blessings with him, it is important also to check raw data from time to time.

Danielle you need to start a school.

On that chart? I tried to show where he is. The bleed into the 2-3 is only slight, because of what I believe he understands.

This is NOT to pee in the cornflakes. This is to be realistic.

While I think it is always important, like I said, to be joyful about Bennett's successes, it is equally important to sometimes toss a cold glass of water in my face and remember that there is a lot of work, a lot of work, a lot of work, a lot of work, a lot of work that remains in front of us, and while we will always strive for him to reach his best potential we need to remember that he is severely disabled only because, as we enter Spring and Summer, I don't want to see him accidentally put in harm's way.

We can't forget his limitations. Nobody can.

BUT...that doesn't mean I'm not going to do everything I can to help him overcome every single one of them. And who knows? Maybe he'll help me with a couple of mine.

OUT.

Ready...Set...THREE

2012-02-13T17:45:00.002-05:00

To say that I was in a state of dread in regards to the 3-year anniversary of Bennett's first seizure event, which was yesterday, would be an understatement of massive proportions. It has in many ways been consuming me, more than I would care to admit, to myself or to anyone else.

My friend Mark and I were discussing it a couple of days ago, and while I was saying that I should not be as hung up on it as I was because it is 'only a date, only a number', in his opinion that was not really true. It is and always will be in my head, he reminded me, the SYMBOL of when life changed for all of us, a point from which there has been no turning back.

Could be any of the dates from that first six months really.

Could be the date of actually hearing the words Infantile Spasms, or the date of actually knowing what they really MEANT, since I had never heard them before. Could be the date of the failure of Medicine 1. Or Medicine 2. Or 3, 4 or 5. Could be the first time we heard the news he that Bennett had a brain tumor. Could be the date of his Temporal Lobectomy.

I get chills whenever I see anyone in surgical recovery. Whether it is on TV or in real life. Nothing really prepares you for seeing your 19 month old kid lying on a bed, pale-skinned and barely moving.

Then again...there is no manual for ANY of these things, is there?

There is no guide for how to deal with all of the things that happen to you along the way when you watch your kid have seizures for months, when you realize that maybe, just maybe, you could have stopped it in the first couple of weeks...if only the hospital who had seen him first had shown his MRI to the right people.

His seizures had a focal point all along, a brain tumor, and he didn't HAVE to go through March, April, May, June, July and August having seizures 24/7. He didn't HAVE to have a growth hormone injected into him that slashed around TWO-HUNDRED GRAND off of his lifetime insurance deductible and did nothing but probably make his tumor grow bigger and very likely resulted in more of his brain being taken out.

Yeah, there is no manual...except the ones provided by many of you. Many of your blogs...those are the guides, they've been mine, through these past three years, as I have tried to keep our ship, and sometimes my head, above water after finding myself in a world I never even knew existed.

My PTSD and my anxiety, my depression...all of it has been in overdrive for a couple of months now. My posting has been scattered and in disarray. At best.

Essentially due to the fact that Bennett has been having some severe behavioral issues. One of the things, at least for me, that I struggle with is what he does to me psychologically and, thus, physiologically.

I've mentioned here before the fact that I got knocked around a bit by my step-father when I was a kid. He was a guy who was mentally ill, and very good at what he did, not only hiding his deviant behavior from my Mom but also placing me into a position emotionally to where I was so afraid that I had no choice but to hide it from her too.

And yet, he also showed kindness and compassion to me oddly enough. Though maybe not so oddly if you give it some thought. See, I was extremely vulnerable when, at the age of 5, my biological father walked out the door, rapidly lost interest and essentially never looked back.

The Step used this to his advantage, as part of his method of control over me. But it also made it very difficult for me at times because emotional states would change very rapidly with him, without warning. It was jarring, to say the least, and one never knew what might set off his explosive personality.

I've struggled with a LOT of this shit through my life, believe me. Struggled with relationships, blah, blah, blah...I was very late getting married, I have explained all of that before. But I have also come a long, LONG way.

Sadly though, my life seems to have done a sort of perfect circle. It is some sort of Bizarro Bookend or something and it has me reeling a little. In this situation though, it is the child who is physically lashing out at the adult. Pretty wild, huh?

I don't react well to violence, which is what I am trying to tell you. Especially from those people who are close to me. So when Bennett, because of his disability, hits me or bites me, I have severe physical reactions to it. My heart races, I sometimes get dizzy and my panic attacks can get overwhelming or out of control. It is astounding how quickly the whole cycle can take over.

Or something else occurs, where around him I can find myself just shutting off. That's another defense strategy my mind used to do and it annoys the shit out of me. My emotions just turn off completely, and I feel nothing. No joy, no anger, nothing, just empty space. I become almost robotic, and that is no way to exist. That is NOT the man I want to be, not the father I want to be, and certainly not any kind of example I want to set for Carter.

So you've got Bennett going through...whatever it is he has been going through, and we can't get him seen by anyone (until my own psychiatrist agreed to step in and see him and that is happening on March 7th), and my own dread building too about this anniversary date. It's like someone shaking up a really old, skunked beer can and then poking it with a sharp metal pick.

Recipe for a stink bomb. So something had to be done, yeah?

My psychiatrist did, as a precautionary, up my dosage of Topamax, which has now been upped for around 8 days and I am starting to level off, which is good.

I do feel better.

But a lot of that is because of Bennett, to be honest with you.

For reasons unknown (well, PARTIALLY unknown), this weekend Bennett decided to be the sweetest, cutest, coolest kid in the known universe. With the exception of a little grouchitude on Saturday morning we had to work through, I cannot remember a time where we had a more pleasant time with him.

Now, everything, and I do mean EVERYTHING, has a price. And the cost of this cute-a-palooza? I had to essentially keep Carter and Bennett separated the entire weekend. Carter stayed upstairs in my office area watching TV and playing X-Box, and Bennett stayed downstairs, playing with stuff and hanging out in that area. Occasionally they mixed, but always supervised.

That way the two of them never could tweak each other, because very often? That causes a lot of the tension. I've come to learn that probably 30% of it is what you might consider what would normally happen between a 7-year old boy and a 4-year old boy in a house, but the 4-year old boy can't really use expressive language or process things effectively and so he lashes out, and then things explode from there.

Happens quite a bit between them, and I can't figure out how to get Carter on board to changing how he 'reacts' to Bennett when Bennett loses control. I can't stop him from shouting and what not and it only exacerbates things. Not sure how to fix that one.

Still...I count my blessings when I can, I really do. Yes, it has been three years, and yes there have been a lot of things that have gone wrong. There have been a lot of things that have gone right, too.

I remember those things and I appreciate them, I promise you that. If I feel overwhelmed sometimes it is usually because of things that stand before me that stack up that I am having trouble solving on my own, and I'm simply afraid that I won't be able to handle it all.

What I have to do, what I'm trying to do, is take things a step at a time. Even if those steps are small, seemingly insignificant steps, I try to make sure I take some as often as I can.

You know, now that I think about it, there was GOT to be some kind of Life Organizing Software out there on the open market that someone has tried. Anyone got any suggestions? This yellow notepad I have here next to my laptop (yes, my desktop is still untrustworthy) is OK for the short-term, but I would love to get a more high-tech option for organizing my priority list as far as the things I need to do to get some stuff in order in Casa de Lilly.

Meantime, if I'm feeling blah, I will just try to spend as much time as I can with Bennett and his trampoline.

Cause there isn't much in this world that is cooler than watching him have that much fun. Of course, he is going to give me and my over 500 Triglyceride level a heart attack before I have had a chance to get it down to a more manageable number.

Oh yeah, did I mention I was going to drop dead any minute? :)

OUT.

*THUD*

Big Time

2012-02-10T09:20:00.004-05:00

There are those folks in your life who often send you little lifelines when you are floundering about with your difficulties, even though often their OWN difficulties are massive by comparison. Elizabeth is one such person. She is one of a group of people who I count among those who often send me 'pings'.

Whats a 'ping'?

Maybe there is a technical term for it, but to me it is just the word I use for those words of encouragement that people send when others in our blogging community go dark. You know, like what I have done of late.

I'm not entirely sure if it is an accurate way to describe what a submarine does to find out if another submarine is still out there in the water, but I think it is, so I use the word. See, when one of us does go dark, it usually is not a good sign.

Sometimes it is. Most of the time? Nope.

Elizabeth will be a part of a Webinar, a Live Question and Answer session, on Valentine's Day, entitled Using Technology to Communicate with Your Developmentally Disabled Child. You'll note that when you click on the link in the title, that it is a reference to Part II.

The first Webinar, the one I did not post about, you can find at this link.

That sound you hear? I mean, other than the garbled sound from the Webinar? :)

That sound is me dropping the ball. I should have had this info to you sooner, and I could make the excuses in regards to the things I have been mentioning regarding Bennett, but the fact is, I should be a better friend than this. A better community member than this.

One day, I hope I can be.

In two days, I will have been a part of this community for three years. THREE. Feels like an eternity. Feels like yesterday. With everything else going on, that impending anniversary, even though it is just a freaking DATE, has my head spinning...big time. I wake up to a racing heart and anxiety. I barely sleep.

Why? Makes no sense at all. It is just a day.

Weird huh?

Anyway, check out the Webinar. I love that word. Webinar. Sounds like a Spidey villain or something. :)

OUT.

Alive & Kicking

2012-02-08T15:09:00.000-05:00

Hi. Yeah I know. Been a while.

In BOTH places. Which is why I am simultaneously posting this in both my blog and at Mission: iPossible. It probably violates some blogoverse rule and will cause the world to implode, so sue me. To me? Whatever gets the wheels of progress turning. That is what is most important.

It occurred to me, while trying to figure out how to best serve the current Mission 3 parameters, that there are quite a few parents out there who have already done the whole 'send in the story' thang. Who have already sent in their child's information, the history, the e-mail, the whole shebang.

Why go through it again?

We don't think they should have to. So currently I'm working out something that can fit into this blog format with fairly simplistic ease (not an easy task...blogger is not as user friendly as you might think) for this and future giveaways so that anyone who enters and doesn't get an iPad and maybe who doesn't find one through other means can have their info stored here. You'll see a tabbed page now called 'PRE-QUALIFIED CANDIDATES', probably a temporary title for now, and I will work it into there somehow.

Of course, that will also require some work on our part to make sure that the people who are still eligible haven't found one already, but we'll work that out as we go.

Work in progress, work in progress. I keep telling myself that...not just here, but as we try to figure out how to work through the behavioral nightmare that is my son Bennett's latest...what's the word I should use? Shitstorm?

Hey! This, at least the Mission: iPossible site, is supposed to be a FAMILY-friendly blog, mister! It still is, don't worry...show me a family with a disabled child where an S-bomb hasn't been dropped, from time to time. ;)

We'll make it through. We always do. And to those of you who have been reaching out with severe concern for my well being? Thanks. I do appreciate it. My psychiatrist has increased my medication, sadly, to try and level me off...dammit, that was something I had hoped to avoid. But waddya gonna do? Sometimes, you have to choose paths that go through very thick weeds to get to the oasis, know what I mean? Consequently for the past several days I have been trying to adjust.

Groggy? Meet Foggy. With a dose of Sleepy and Out of It.

That very same psychiatrist, who is a true diamond in the rough doctor, a rare gift, was asking me about Bennett...trying to find out who was managing his care on the Behavioral Psych side of things. I told him no one at the moment. At Cleveland Clinic, his Behavioral Psychiatrist had retired, and we have not found one here to replace him, and we are not able to take him to the local hospital for a lot of reasons, many of which I shared with the Doc.

I did tell him that we contacted 14 Behavioral Psychiatrists here in the area...FOURTEEN, and none were taking new patients. But I also told him that things were completely out of control and I told him some of the things that had happened.

He just looked at me and said.

'I'll see him.'

And in three and a half weeks, he is going to. He said that it will require a little more work on his part, and some research into Bennett's background and some info from me, but he wants to help, as much for Bennett as for me, since I am his patient too and helping Bennett helps me too.

Don't find 'em like that much anymore, do ya?

It isn't long term, but it was something very...nice, in what has been a very long stretch of dark these past few months.

That's about it for now. Not sure when I will get back to regularity here within these pages, though I need it. Soon, I'm sure. Hopefully.

OUT.

500? Does it Matter Anymore?

2012-01-26T23:33:00.000-05:00

People are starting to worry about me.

Again.

I had hoped to write something very cool for post #500. Ain't gonna happen.

I can only describe my son Bennett's behavior as manic. Almost maniacal at times. Aggressive and then wildly giddy. And Carter? I feel like he just slips away from me...day after day. He doesn't really understand why things are the way they are with Bennett. I wouldn't either at his age.

It's fucking insanity in this house right now. On all fronts. I have something wrong with my eyelids now. Meibomianitis. Yeah...that's a new thing. Just found out.

Apparently, all the dry skin from my forehead has, over the past year, collected on my wet eyelashes from having had too many days of teary eyes, and the natural bacteria in my eyes have feasted, so my pores in my eyelids are all clogged.

Our Home Health Aide's mom passed away on Sunday. Lost her battle with Cancer. She is like a part of the family, which in and of itself is bad cause you feel bad for her. But then she needs time away...and hence, our stress level doth rise because we are floundering.

We cannot get Bennett seen by ANY local behavioral psychologist. And we've tried them all. A few places have tried to refer us to the hospital here in town that fucked him up in the first place. Eventually I got tired of telling that story to uninterested people.

So what the FUCK is it going to be tomorrow?

I'm just pissed, what can I say? I'm in a bad place, that's just the way it is. So yeah...everybody who has sent me messages, saying they are worried...this time?

You have every right to be. For a while.

But I will get past it and climb over these humps too. It will just take some time.

OUT.

OK, I'm Cheating

2012-01-14T12:35:00.001-05:00

Not THAT kind of cheating.

I actually went back and deleted a post that nobody cared about, one of the many about those block figures I love so much that, frankly, just don't belong here anymore, in order to make THIS post NOT be the 500th post of this blog.

Why?

Because all of my Blogbuddies are talking about this article and posting about it and spreading the news about this and so I wanted to also join in.

It's just...an amazing, mind-blowing article about the absolute worst the medical community, and perhaps humanity, has to offer. Some people in a hospital apparently taking the position of stating they will not perform an organ transplant on the disabled daughter of the author because she is 'Mentally Retarded'.

You just have to read it.

Me? I'm having a weekend from Hell. But my son is having it much worse.

Bennett is slamming his head into pretty much anything and everything. He's hitting and biting and beside himself with...whatever it is that is driving his emotional state through the friggin' roof.

SO...I probably WON'T be finishing the 500th post this holiday weekend, OR my Fruitless Pursuit offering, OR my iPost about Helene's receipt of the iPad from Mission 2 at Mission iPossible (which I do have pictures and text for (thanks Suzie!), OR the announcement of Mission 3 (which we are ready to start, we have the funds now for I believe 6 iPads collected, yup you heard me...SIX).

But all of that has to wait. I have to try to take care of my own right now because right now my family is tearing itself to shreds.

Gonna work through it. Gonna figure out a way.

Because my weekend is nothing compared to what others in my family are going through. I'd like to take a minute to say a couple of words about the passing of my Uncle Lloyd. He died yesterday in Arkansas. My Mother was at his side, has been for weeks, as he finally lost his battle to lung cancer.

Of my mother's brothers, Lloyd is the one I knew the least. Mostly because of location, he just always lived furthest away from wherever it was that we lived. So I can't speak much about the man, since I hardly knew Lloyd, I can only speak about my Mother, whom you know I admire, and love, and worry about, probably more than I should. The worry part...but you know what I meant.

That photo is an oldie but a goodie. It's my Dad there, my real Dad, who I never really knew, my Mom, my Grandmother, my Uncle Gary barely visible at far right, and Lloyd is there at the far left. It is the only photograph, or one of the few that I actually possess, of Lloyd.

These photos carry with them a certain weight now. So many people lost. Of the people in this picture that had or have any significance in my life, the only one left is my Mother.

One thing about my Mom. She never expects praise. Doesn't even care for it all that much. It's always been her way.

She's probably fairly uncomfortable with this particular blog section, to be honest. But these are my thoughts, my feelings, and I never really hold back. And why stop now, right?

But I have to say, that the way she was there for Lloyd these past few weeks was just...remarkable. Her and Ken (my stepfather) both. And my Mom's other brother too, who I could write a novel about (the man is so interesting), but suffice it to say they all stepped up to the plate in ways that...well, in ways that are just...who they are.

And that's maybe the greatest compliment of all, when it comes right down to it.

At the core they are simply...good people.

A sharp, sharp contrast to the type of folks in that article, yes?

OUT.

Along For The Ride

2012-01-11T14:00:00.046-05:00

Apparently, accompanying the recent addition of tears and other emotional outbursts that Bennett is experiencing is a whole helluva lot of anger.

He uses the word 'MAD!' quite a bit, and while some of you will say 'Lilly, hey, that's terrific, he's using a word appropriately!', I will remind you that while it is a terrific thing, what is not terrific is the fact that he will, while screaming the word, slap himself in the head, bang his face into a wall, bite his arm until there are actual teeth marks and throw heavy objects across the room putting other objects (and people) in danger.

His eating has become pickier again. Food flies across the room when it isn't what he wants. As the frustration levels increase, the tension level in the house increases. We are all like pimples, swollen and ready to burst.

And I am not setting a good example, because raising my voice to settle him down to keep him from hurting Carter or something like that when he is in frantic mode, while it will work and pull him out of his Tazmanian Devil-like whirlwind of a tantrum, this can't be a good message to send to him. This has got to be teaching him a bad behavior.

I DON'T KNOW WHAT ELSE TO DO. Somehow, I need to learn.

And so, we are really at our wits end in Casa de Lilly lately. Stress levels are high. As high as they have been in a long, long time.

Adding to it?

2012 brings with it a much more expensive Insurance Premium per month, and it was already high. And with that? A higher deductible. And it used to be that one person in the family could wipe the deductible out. So when Bennett would get his first MRI of the year, the MRI would cover the deductible. He has to get 3 each year now to check for recurrence of his Brain Tumor which...oh by the way, the insurance now does not fully COVER the MRI, but he is on a Level One Medicaid Waiver that covers the rest, Thank God.

I do still know that I have to be thankful for that in light of the fact that 2 family members have to NOW split the regular insurance deductible. Which means, now I need to get really sick. Or someone does. Because otherwise we ain't meeting it until sometime over 2/3 of the way through the year. And that's going to hurt. BAD. In addition to the $160.00 extra PER MONTH we now will be paying in premiums, I mentioned that, yeah?

SO...I have a decision to make. Well, I've already made it, I just have to talk about it. I've mentioned it here before, but I am on a shitload of medications. As of now, I am going to have to stop taking some of them.

I don't have a choice. We just cannot afford to buy them each month. We don't have the money. It doesn't exist. I'm not going to stop buying Bennett's medications. I'm not going to stop buying anything else my wife needs or Carter needs.

So it's up to me.

Some of what I take, I take because I allowed things to happen in my life I had control over. Some I take because I have to. The ones I have to, I will still take, but I will start looking into ways to cut them out. The ones I take because of the way I lived, I will stop. And I will compensate by changing the way I live.

I've changed things before out of necessity. I've changed things before out of desire. I quite smoking over three years ago because I was inspired by my Mother, who quit after smoking her entire life. I quite drinking Diet Coke and other carbonated beverages last year, after drinking at least 3-4 a DAY for as long as I can remember, because I found out I had Laryngopharyngeal Reflux.

I can do more. I will have to do more.

Conservatives I know rip the Hell out of the so-called 'Obama Care' Health Care Reform and love to talk about what a crappy president the man has been. All the Republicans have done since they took over Congress has been to cock-block ANY significant change for the better just so that they can try to make it easier to win a presidential election with a bunch of shitty potential candidates.

That's despicable. And you know what? Were the situation reversed, the Democrats would do the same fucking thing. Party politics is ugly. It gets us nowhere. But I am a simple man, maybe it is just beyond my understanding.

Over this past week, I have started re-organizing a ton of my Facebook photo folders, mostly for the sake of my Mom, who has been spending a ton of time in the hospital, caring for a family member, who is not doing well. I try to load new pics when I can, so she can have some stuff to look at. I've also been posting more, so she can have stuff to read.

On the X-Box 360, I have a Facebook App, which lets me view the photos on the big TV, and Jen and I and Crystal (the Home Health Aide) were looking at a bunch of photos and we came upon a trio of photos of Jen, Carter, Bennett and me from Bennett's first birthday party. I paused on them and had some tears in my eyes. They weren't falling, I just looked...moved.

I was trying to explain to Crystal the reason why. See, she doesn't know the Jennifer and I and Bennett and Carter before The Incident, before The Infantile Spasms, The Tumor, The Surgery, The Autism and Everything Else. She only knows us as who we are right now.

And there was something about the photos that had a unique significance and meaning to me. They were special to me, they ARE special to me, because it was probably the last time I could remember the four of us being in a group of photos together where we all looked happy, where we all seemed like we did not have the weight of the world on our shoulders.

It was around 12 weeks before Bennett's seizures started. 12 weeks before Ground Zero.

It was hard to actually click the button and keep going forward in the Slideshow.

You know, as we turned the corner into this year I was feeling very optimistic. And when Jen brought her paycheck home and told me this stuff about her insurance, it really kicked me in the gut. It didn't help that it was on the same day that I got hit with two unexpected bills and a return on something I had sold.

Bad day all around.

But her news just reminded me that we still have so many obstacles in front of us, and sometimes it feels like we are never going to be able to punch through them all. I was really down for a couple of days. Bennett's recent swing into this unexplained emotional roller coaster has not made our lives any easier, but these feelings weren't really about Bennett exclusively, they were more about Everything.

They were more about how difficult Everything has become.

But then I remembered, again, a Truth that has been forgotten then remembered, forgotten then remembered, forever getting lost in my head, eluding my conscious mind always when I need it the most because of all the Piles of Bullshit that gets stacked on top of it.

Isn't that the way it has ALWAYS been? Isn't that how it always WILL be?

Isn't that just Life?

Isn't Life just a series of obstacles to overcome? Isn't it just a set of problems to be solved? And does it ever really just 'go your way'? Maybe sometimes, when you are lucky, but most of the time you do need to nudge it in the direction you need it to go or just relax and roll with it and be prepared for any changes in direction that you might have to take.

Because there are many. And there always are. And not just in Our World. In everybody's world. Because we all struggle, even those of us without kids with disabilities. It just takes on different flavors, different tones. I think we, as parents, with these kids, I think we feel a special, unique kind of pain. I really do. But I think a lot of specialized groups feel a lot of specialized pain, too.

But I think that there is pain and suffering everywhere, no matter what group you belong to. It is part of the Human Condition. That's just Life.

What am I saying? I am saying, or trying to, that believe it or not I STILL FEEL optimistic, despite everything I just told you I was scared and freaked out about.

Because the alternative? Well, to see the alternative all you have to do is go back and read the last three years worth of blog posts. I don't like that alternative. That isn't the place I need to be.

And here, in this 499th post, as I turn the corner into my 500th, I would like to think that I've learned a few things on this journey.

In the past couple of years, as I have reeled from some of the blows received, I've often felt like a passenger, that I was just along for the ride in my life. I have felt as if I was not really steering the H.M.S. Lilly. Many time it has seemed as if my ship was adrift at sea, and aboard her I war merely a stowaway, sneaking out of my hidey hole occasionally to steal an apple and some moldy bread.

But now I feel a compulsion to stand at the helm, to take command, to lead her out of the deluge and into calmer waters and, with any luck, maybe reach an island or two from time to time where we can make port and spend some time relaxing and take refuge from the salt and the storm.

That's why I choose to remain optimistic.

Because I need to be.

OUT.

I Think God Has Better Things To Do On Sunday Than Watch Tim Tebow

2012-01-10T10:00:00.039-05:00

There. I said it.

Now get over it.

I'm not anti-God. I'm not anti-Denver Broncos. I'm not anti-Tim Tebow.

Granted, I am a little tired of the whole 'Tebow-Time' craze, but like most things in this nation, it is just that, a craze, and it will pass. The truth is I don't really care much about it in the long term.

Nor do I begrudge Tebow's expressions of his Faith. In fact, I commend them. Any person is entitled to express his beliefs however he chooses. I have great respect for players like Kurt Warner and Troy Polamalu, both Christians, who openly express and talk about their Faith...and take shots from fans and players alike about it.

What I can't stomach are the flock who somehow suggest, or hint, that God is somehow on Tim Tebow's 'side' because of his Faith, and by 'on his side' they mean not that his Faith helps him NOT JUST in his day to day life like it does for you and me, the regular folk, but they say it in a way that suggests that God somehow influences the outcome of the game itself. (Of course, when pressed, these individuals cannot explain how Denver lost the last three games of the season and backed into the playoffs with an 8-8 record ONLY because they are in the shittiest division in the NFL, but I digress.)

I find the concept of God putting the 'fix' in on a football game to be...monumentally ridiculous. Not to mention short-sighted.

Let's go for the obvious first...it's FOOTBALL, for Chri---, um, for Pete's sake...God is going to decide who wins the game and who loses it? Really? THAT'S what some being who has POWER ABSOLUTE is going to spend his time on?

Then can someone please tell me why...oh WHY, did he let the Pittsburgh Steelers beat the Arizona Cardinals in Super Bowl 43?

Kurt Warner is a tremendously devout Christian. Did you know that when he met his wife (to be), she had a child from a previous marriage, a child with a disability (Traumatic Brain Injury), and he didn't bat an eye? In fact, he treated Zachary with a love and dignity his own father never did? He's a good man, always involved in charitable organizations. I personally admire the guy like very few in the NFL. The typical Quarterback arrogance that usually attaches itself to any gunslinger who has success missed Warner, thankfully.

And of course, Warner is so open about his Christianity that other players often made fun of him.

And yet...God 'let' the Steelers with the Super Bowl. Hey wait a minute...didn't Big Ben go on to do all the stuff to those chicks...allegedly? God would know all that right, being OMNIPOTENT and all, yeah? How can that be the right thing to do, G-Man? I mean, is that just?

My point is, you can probably find a Christian on ANY football team. Or villains. So how can you say ONE Christian on ONE team is more worthy than the other, or more bad guys are on one team than the other, to make one team on the field more worthy of winning?

ZACTLY.

Which means, logically, that it shouldn't really be the case that one should surmise that God is guiding a spiral into the hands of a Wide Receiver for the winning touchdown. I just don't believe it.

Because like I have always said...if I believe THAT...then I also have to believe that God guided a brain tumor into my son's head. And I just can't believe in a Supreme Being that would be so very, very heartless.

There was a very wacky article on CBS Sports about certain numbers 'aligning' and how it kind of had significance, all relative to 'John 3:16', a passage from the Bible that Tebow used to wear on his eye tape back when he was allowed to. Thankfully, the NFL doesn't allow for that kind of 'personalization' of gear in the pros.

The article shows all kinds of connections, about how he threw for 316 yards, blah blah blah. Yadda Yadda Yadda.

And the fact is, that you can go in and come up with statistical analysis to back up ANY belief system. There are a TON of stats in any game, anywhere. IN fact, I love what one commenter said below the article.

'29 (Den points scored) x 23 (Pittsburgh points scored) - 1 (Tebow career playoff wins) = 666. Oh no!!!!!'

That pretty much sums it up right there for me.

Look, I'm not bashing Tebow. Or anyone else. And like I said, I admire anyone who is willing to put their Faith on the line and express it and put themselves out there and face possible ridicule. Hell, I've done it here.

But c'mon football fans, you have GOT to get over the whole Divine Intervention idea when it comes to the NFL and Tim Tebow. You just gotta.

Besides, everybody knows that God's favorite team is the Baltimore Ravens.

OUT.

Got Fruit?

2012-01-05T13:30:00.007-05:00

I missed a week of posting at Fruitless Pursuits. Swore I wasn't gonna let that happen since I 're-committed' myself. Actually was doing quite well, though not actually posting reminders here every week, I was still hitting it there, though they weren't always doubles or triples...they were mostly singles.

OK, bunt singles.

OK, OK...hit by pitch. But at least I was showing up to the plate.

And as usual...PLEASE BE CAUTIONED. I curse like a drunken pirate at port over there...I make no apologies for it. (And yes...I do mean WORSE than here!)

Thou hast been warned.

OUT.

Finally...

2012-01-04T16:05:00.002-05:00

Been waiting for quite a while. Finally got some a day or two ago. I'm talking about snow obviously. Not 'some'. Of course, like 'some', it was not really quite enough and it didn't last all that long, but I'm not complaining.

I wonder if this means this winter we won't get much snow or we will get a late deluge? Guess I'll have to check the Almanac.

Thanks for the supposition and support and words of encouragement regarding Bennett's recent emotional roller coaster ride. Appreciate the commentary. I hope it is a sign of good things to come. I hope it is not a harbinger of something...not so good. I remain, with surprisingly little effort, cautiously optimistic.

OUT.

This Is Damn Peculiar

2012-01-03T18:15:00.006-05:00

OK, so I spent the last 24 hours or so beating myself to a pulp over yelling at my disabled son and causing him to cry. What's the big deal? I'll tell you.

As I explained earlier, he doesn't really cry all that much, never has. It takes an extreme amount of anything to get any kind of tears out of the boy, and even then it is nothing overly dramatic.

He came home from school today in a good mood, and everything went as expected. When Crystal, the Home Health Aide, had to take him out of my office away from my fan (he got in there because Carter had left the gate to the upstairs open), you are not going to believe what happened as she carried Bennett down the stairs.

Cue: Floodgates.

He had the exact same type of crying outburst that he had yesterday, and I spent the next ten minutes getting tears and snot on both shoulders of my shirt, just like yesterday. The only difference was, that today, unlike yesterday, I was not crying too.

I was perplexed, puzzled and confused.

What in the world is happening to Bennett?

Now, instead of me being nominated for Lousiest Father of the Year for 2012, there is a riddle wrapped in an enigma stuffed inside a burrito (I'm hungry it is way past dinnertime), a new wrinkle in the life of Casa de Lilly. And we are going to have to figure out exactly what is going on. We'll have to, unfortunately, now study every aspect of Bennett's emotions, for days, and try to gather data on him to discover what might be going on.

Perhaps yesterday I didn't yell as loudly as I thought I did. I may have judged myself a little too harshly too quickly (imagine THAT!?!?). But the downside of that is that it means that this is Bennett-centric, and I'd rather it not be.

Could this be related to his Risperidone not really working anymore as his weight/height is increasing? Could it be his personality changing as his development changes? Could it be changes within his already complex and difficult to understand brain, 2/5th of which isn't there? Could it be diet? Environment? Richard Nixon? Martian invaders?

I hate this mufuggin' guessing game.

Why couldn't it have just been me being a shitty Dad?

OUT.

And So I Did

2012-01-03T13:30:00.005-05:00

Bennett is not a boy who really cries. Never has been.

It's uncanny really.

He's taken full headers jumping off of furniture and his parents have had their stomachs go up into their throats with fear and then he has stood up and just shaken it off. I have read a few things about kids with Autism and/or Brain Injuries who experience pain differently than we do. I believe it.

I also believe it to be true when it comes to emotions in general. He giggles or laughs at things that anyone else would, like farts, a perennial favorite, but he also begins laughing or giggling for no reason at all, at whatever performance he may see going on in his head.

Only he knows for sure.

Yesterday, I wrote about my fears that I was at a breaking point. Those fears were not just smoke and mirrors. Bennett threw something across the room at the tail end of a tantrum that was out of control and I yelled at him. And I mean really yelled at him.

I have a booming 'Discipline Voice', and when I say 'No No!' it typically stops him from doing something that is dangerous. This I do not mind at all. In fact, I like it. It certainly is something I liked having in my pocket a week ago, when Bennett slipped past all the chaos when a guest left the front door open at our holiday party and, by sheer blind luck I happened to be outside unloading a car when I saw him darting across the neighbors yard.

MY VOICE stopped him cold. For about 5 seconds. Which gave me just enough time for these 44 year old, extremely out of shape legs to get some steam behind them to start running and catch up to him.

But yesterday, we were inside, and MY VOICE was just...well, it was too loud. And I scared the shit out of him I think.

For the first time in the 4+ years I have known him, he was sobbing. And he was so...confused by it. As if he didn't really understand the emotions that were coursing through him. Of course, I held him, and lost it myself.

This, THIS, was not what I wanted. It is not what I ever want.

Of course, the boy regained his composure far more quickly than the Old Man. I could not contain the flood, and my poor son Carter, age 7 and a half, had to witness it, something I have always tried to shield from him. It was not pretty.

From my background I've always had a unique sensitivity to causing my children pain, physical or emotional. I detest it. I fight against it. And yet, it is unavoidable to a degree. You can't, as a parent, always make your kids happy. That's a Truth with a capital 'T'. But you can, as the father of a boy who has a severe disability, recognize that the things he does he does because he has no other option. It is not his fault.

And what was really punching me in the gut as I sat there, convulsing with tears, is another Truth. As he gets older, what in the world am I going to do if he leaves us? Because how can I possibly trust anyone else, 100%, to care for him? Because if his own father, who loves him with every single cell in his body more than anything else in the world, could be pushed to the brink to yell at him and push him to tears, how would someone ELSE treat him, who doesn't have that love as a fail-safe to pull them back to reality?

Sometimes, a cold dose of parental Guilt is exactly what you need to get your head out of your ass, you know what I mean?

That would not exist if he were somewhere else, and that is a very real possibility as far as his future is concerned. Maybe not when he is a child, but possibly when he is much older. I dunno...I have a hard time seeing him being able to live on his own.

Obviously, I'm hopeful. And I do try to believe that the pace will pick up, that the curve will begin to become steeper and not so...gradual. Clearly, I want to be optimistic that as each year passes he will take broader steps forward, and not take any steps backwards.

But I need to do the same, and figuring out how to avoid letting the steam build up like that to where the cap pops off is critical. I never want to see him cry like that again, especially if I am the one that causes it. Ever. I never want to let Carter get so shaken up and see his Father fall apart like that. Ever.

This Road is hard enough. I don't need to make it harder.

If you decide you want to leave a comment, remember something.

'Don't be so hard on yourself.'

'We all lose it.'

'You can't blame yourself.'

'You're a good father.'

These things, or derivations thereof, I already know. I am just venting a little. Something I should do more of, obviously. But I'm not looking for sympathy, because frankly it is not deserved here.

Something occurred to me while I was writing this post. I think this...compulsion to share these experiences is what keeps me from really leading something like Mission: iPossible to the the next level. As long as I have this blog, and am so personal on it, and I have pics of people with heads up their butts...I don't know how I can balance the two effectively.

Maybe there is a way and I am just not seeing it, but how can people take me seriously as a leader of an organization like that if I continue to expose weakness after weakness in a blog like this one? Does that make sense? And unfortunately I don't have the luxury of going back in time and starting this blog over anonymously.

And yet, I also recognize that my open nature and candor is part of what made it possible to engender trust and security and make that very first Mission of restoration successful. For that part of it there was a relationship that made a lot of sense. But beyond that, as far as growing it into something greater, something more professional. I don't know. Am I really that person?

Perhaps I am over-thinking it. I wouldn't want the stress of the last two weeks to cloud any of my judgment. And it very well might be. My brain has been all twisted up, all night and most of the day.

The funny thing is, today was Bennett's first day back to school.

And all day long? I wished he was here.

Now THAT'S crazy.

OUT.

I'm About to Lose It

2012-01-02T11:00:00.014-05:00

As beautiful and warm and sweet as Heather's first blog of the year was for 2012 is, mine is...not going to be.

I don't know how she does it, to be honest. 347 kids in the house all at the same time? Unreal.

I've only got two, and right now they are driving me fuggin' crazy. Bennett goes back to school tomorrow. Carter the day after. Thank God too, because any longer and I might be jumping off my roof.

Scratch that. Since it was not built properly and leaks like the Titanic, it would likely not support my weight long enough for me to leap.

Bennett keeps repeating the word 'Asshide'. Which either means he really doesn't like me, or all he wants to do is get the Hell out of here. It's his word for 'Outside', which he REALLY wants to get to, but its cold, its windy, and I can't take him 'Asshide'.

Carter doesn't help a lot since he is bored, both his original X-Box (non 360) controllers are broken, I can't find replacements, he has lost more Lego pieces that I have lost hairs, and he tweaks Bennett all day long.

Bennett's also getting much bolder now. And into way more things than ever before. I have to entirely rethink some of the household configurations. And I haven't the first clue. He's not a child anymore, so 'Child Safety' stuff does not apply, he can snap 'Child Safety' stuff like its nothing. But he can get access to kitchen areas now and the like very easily and I have to figure out how to deny him.

He needs his routine back. He isn't so exploratory, aggressive, or self-abusive (yeah, that has been a bit more commonplace this past week say the bruises and bite marks up and down his arm) when he has that. Truth is, if we could just freakin' TALK to each other, it would make a huge difference.

I just keep telling myself to hold on.

To what? I have no idea. ;) To them, most of the time.

OUT.

Mice. Men. Doesn't Really Matter Does It?

2011-12-30T14:00:00.002-05:00

They are still the best laid plans and they always seem to go awry don't they?

John Lennon was definitely not a stupid man. At all. I'll get back to that.

My plans for so many things got blown to Hell and gone this week. The stomach virus I caught earlier kept me from writing about how I took a 3-9 Fantasy Football team from last place to a Super Bowl Championship. A fascinating Cinderella story.

Sorry, Elizabeth and Claire, I know you are both deeply, deeply disappointed.

I was not able to write what I wanted about my 9th Anniversary to my wife Jennifer, which was on Tuesday the 27th, and since she had the same virus, we did not even celebrate it.

Sadly, we do not have a Love Toilet.

In fact, right before the graphics card on my computer crapped out, so to speak, I was working on something for her that was SUPER cool for the occasion. Had to stop because I could not do it on my laptop. Needed the desktop power and the monitor capabilities.

I got so behind because of the virus and then our Home Health Aide's mom had to go to the hospital for 2 days with pneumonia so Crystal was out and I had to watch the kids for 2 days (one of which Jen and I sort of tag-teamed cause we were both on Day 2 of the virus) so I got even MORE behind on blogging stuff. So the 'Best Of' thing I was trying to finish for 2011?

Mmm...it's fifty/fifty now, at best.

In fact, all month long, all this winter even, delays and sidetracking have plagued me like...um, the PLAGUE. I was SO CLOSE to finishing the year with my 500th post. How frakkin' COOL would that have been? Instead, it's going to be ending with either Post #494 or #495 or something.

Well, I guess it gives me something RIGHT OUT OF THE GATE to look forward to in 2012, right?

Of course, there was also my Mom's thing that I got denied on. That was also just before the computer took a dooky and stopped me from finishing something for my Mom's Christmas gift that I was working on in Photoshop. Again...laptop limitations meant I could not finish it.

These days, I have to really think about what I get my Mom as gifts, because she pretty much has whatever she wants or needs, and she just doesn't like to have as much 'stuff' as she used to. She's streamlined a lot of the junk in her life right out the door.

So when it comes to giving, it either has to be something impersonal, like a gift card or something of that sort, or I need to go the consumables or perishables route. Typically, I like to reserve consumables for Mother's Day, the birthday, stuff like that, but even that is a little tougher because she likes to have a tighter control over the stuff she eats.

Thankfully they ship some damn nice fresh fruit nowadays. Of course, there are always flowers. That's always a decent standby, but to me, flowers are sort of a last resort.

There is some difficulty in settling in on what road to go down when it comes to Momgifts, especially if I want to express anything sentimental, because, like I said, she is trying to not hold on to so much 'crap'. Making a piece of art is not an option so much anymore either, since a lot of the art I have given her has found its way back to me since she got her diagnosis.

She wants to make sure it ends up with me in case...well, in case.

It may seem strange to talk about 'The Diagnosis', since I haven't in a really, really long time, and I don't bring it up much in these pages, but that's only because you gotta know something about my Mom. Ever since she found out, ever since I found out, the simple fact of the matter is that my Mom has had...an exceptional reaction.

She has been one of the most upbeat, positive, uplifting people I have ever seen.

Rather than folding like a lawn chair, she is living her life as if nothing has changed, but also as if everything has changed. I'm not quite sure how to explain what that means, I know it might not make a lot of sense to most people. But that postivity rubs off on people, and on me, and so we don't dwell in it.

And that is a good thing.

Wish I could offer a better explanation than that. It get it, but I am seeing it, experiencing it. But as is the case when I am so vested emotionally in something, I find I can't quite express what I am trying to the way I want the most.

I'm proud of her.

Yeah, sometimes she drives me nuts, as I do her, because she can be stubborn about some things, but at the end of the day? I admire her cajones, her chutzpah, but not as the word is used in the traditional Yiddish in regards to insolence, rather along the lines of how it has morphed into a reference to 'intestinal fortitude'.

So the smaller, more manageable gift for Mom sits on my desktop hard drive, inaccessible to me, and as Time keeps ticking by, and the Graphics Card is still not going to be here until sometime next week, AND since my Mom is hip deep in an entirely different struggle with another member of our family in the hospital that I am not certain she wants me writing all the details about, I figured I would try to reach out some way in the digital world.

So I started loading a bunch of photos into Facebook of Christmas memories gone by for her to enjoy, and Thanksgivings, too. I've peppered some of them through this post. As the NYE weekend progresses I'll insert as many more as I can get retouched and uploaded. I can't scan any of the ones in 'The Stack', because the Espon Scanner Driver won't load into the Laptop (fuggin' VISTA), just the printer driver. So I'm going with stuff I already have in the Laptop.

I know it isn't ideal, Mom, but maybe, through your own Laptop, you can peruse some pictures while you are in the waiting room or in the hospital room itself, remember some good times long gone, and look forward to more memories that are still out there, yet to be created.

The other gift I was working on?

I'll save it for next Christmas. And in the meantime, just take care of yourself, pat yourself on the back, and remember you raised a pretty good son, warts and all. ;)

Out on the ocean sailing away
I can hardly wait
To see you come of age.
But I guess we'll both just have to be patient
'Cause it's a long way to go.
A hard row to hoe
Yes it's a long way to go.
But in the meantime

Before you cross the street
Take my hand.
Life is what happens to you
While you're busy making other plans.

Before you go to sleep
Say a little prayer.
Every day in every way
It's getting better and better.

Beautiful, beautiful, beautiful
Beautiful boy.

-John Lennon

Hang in there, Mom. Merry Christmas.

LOVE YOU.

The Side Dish Drama Continues

2011-12-29T12:55:00.003-05:00

When will this family/disabled child blog actually return to its roots? Soon I promise!!! Probably should, too, as the readership continues to plummet. Oh well, waddya gonna do? I write this for a few key people that I picture in my head, and always have. And for me, too, and the preservation of my melon.

Anyone else that gets anything out of it is an extra blessing. Would I love it if it was more popular? Yeah, sure, I'm still a HUMAN BEING (at least...I think I am...sometimes) and I know ways I could get it more exposed. But I gotta balance my priorities I suppose.

I do have some Bennett-related stuff I want to get to, but I am still dealing with my friggin' computer, not to mention a nasty post Christmas stomach virus for the past two days. Hey...at least I didn't go the 'Yule Log' route this post was originally headed. Even I have my limits.

You can thank me later.

As far as the computer goes, as it turns out, it was not a Fried Monitor at all.

It was Fried Graphics Card.

I tried a bit of an experiment at the suggestion of Dr. McCoy. Not THAT one...though that would be super cool, I'm talking about the computer physician who gives the medicine to all my computer stuff all the way from the East Coast, my good buddy Chad.

I plugged the monitor in to Jen’s desktop. For 2 days it worked like a charm. Not a problem at all.

So I opened up my machine.

Wow. It was OH so very dusty. I looked at the graphics card. I never knew it even HAD a fan. When I sprayed in there with one of those compressed air can thingies, the shit that came out?

HOLY GOD. It was like a terrorist attack.

Anyway, even after cleaning it really well, the fan would not turn at all with air blowing on it. With my finger, the fan was hard to turn at all. I was pretty sure that what was happening was that the card was overheating. It was a reasonable explanation for the behavior, since the monitor would work for a time, then I would have to shut down for a while, then boot up later when the computer was cold, then it might work a day or so later, and as long as I never let the computer heat up too much.

This hypothesis was confirmed by another computer genius, my bro-in-law Eric, who took the graphics card out at our Christmas Party on Monday and removed the fan and confirmed that it was, in fact, and he used technical computer-speak jargon I had a little bit of difficulty understanding, 'Fucked'.

So Chad helped me pick out a new Graphics Card and it was ordered and it is on the way, and it will have to suffice for the time being because a full computer replacement, sorely needed on that 2005 fossil, just isn't in the budget right now. Won't be for a LONG time.

But hey? Could have been a HELLUVA lot worse, yeah?

YUP.

OUT.

The Perfect Side Dish Is?

2011-12-23T15:45:00.008-05:00

What is the perfect side dish for Fried Monitor?

Well, in case you are planning a dinner party and are serving a feast that is featuring such a delicacy, I have discovered the answer!

And lest you think there this is any sort of inspiration from Elizabeth's blog, 'TIS NOT! Here there not be cakes or pies or other amazingly tasty treats. Sorry, but you'll have to seek those and other candy-coated shells of a moon at her site.

And lest you think this is any sort of inspiration derived from Claire's blog, 'TIS NOT! Here there not be oodles of coffee porn, with images of luscious latte's and captivating cappuccino. She's got plenty of those items if that's yer fancy.

Here?

Here you get none of those delights, here you get a side dish of Dead Battery to go with your Fried Monitor. Perhaps you were expecting something a little more...cheerful?

Ree-hee-hee-HEEEEE-LY?

OK, so MAYBE I've evolved slightly past Neanderthal over the past, oh...year or so, to where I am a bit more positive about this thing called Life and stuff, but it is still me, and I can get worn down, and it did not help to wake up this morning to a suddenly bleeding mole that is painful as all get out, searing pain up my back from ripping something in my right shoulder while I slept, and the now-dead battery in my wife's car.

Just hasn't been my week.

The fact that both kids are home all day, WITH me, for the next couple weeks?

Joy to the WORLD!

It's not so bad, actually.

Especially now, that I got it all off my chest. I feel better already, in fact.

Because simply put, when you have some help, everything is different.

My wife helped me get some ointment on my back and that helped with some of the immediate pain of the torn muscle. As the day progresses, Ibuprofen is helping with the tear as much as it can. I have the ability to control what I do and do not do as far as physical work force on my back.

Jen's father came by this afternoon and helped with going up to the auto parts store and HE was the one who essentially installed the new battery into Jen's car since Jen took mine to her office. Yeah, it was another monetary expense we don't need this month...but that is out of my hands. Shit? It do happen. Could have been worse. The battery could have died while she was AT her office. Or in traffic.

Crystal, the Home Health Aide who is still with us, is working days and not nights, and it is a tremendous, TREMENDOUS help, and I never say that enough. I mean, I do to her, just not to everybody else.

The mole? Well...that I'll have to just get checked out. Scary, but nothing I can do about that right now, but I don't need to worry about what is not right in front of me.

What is right in front of me? My two kids. Together. Getting on my nerves a little bit, but a lot of the time it is an absolute joy to see them as much as I do. I tend to treasure these experiences more than I used to. Bennett is...blowing my mind in ways I never dreamed. He's not writing any dissertations or anything. But he is peeing and pooping on the potty with some degree of regularity now.

I have no idea how we are communicating that he has to go. But we are. It is the same word for any 'voiding'. He just says 'Poppy' now. We take him on our own sometimes, but he lets us know as well. He has not really had a Number 2 accident in weeks. Number 1 hasn't been a huge problem either. He is wearing that extra thick underwear. He wears diapers to bed, but 6 out of 7 days he wakes up dry.

That is HUGE. HUGE.

I guess the truth is, that even though I try to say that things aren't all that different for me, inside my head, they really are. Especially when it comes to how I am managing my outlook when things go wrong. I count my blessings. A lot more than I used to. And that means something.

No, that means everything.

At least to me.

OUT.

What's a Good Side Dish for Fried Monitor?

2011-12-21T09:15:00.000-05:00

Never fails does it?

You get all excited because you know that TIS THE SEASON. You know that some extra cash is going to be coming in. Gift cards, the green stuff itself, and you know that you'll probably have a little extra dough to play with this month because...well, it is just that time of year.

And there has been a little issue regarding the TV that we had been trying to solve for a while.

Now I know some people have a TV in every room, even in the crapper. We aren't those people. I also know that there are people who have only one TV, or who have a TV that is a piece of junk, and who would give their left one to have a TV like the one we have. So I do appreciate what we've got.

And we have a MONSTER.

Now, the MONSTER was purchased back when we weren't in the position we are in now. Jen had a different job, one that was...well, let's just say better. I had a...well, let's just say a future that was more...promising. We paid cash for it, AND we got it as the prices were coming down on these things, too.

We have two other TV's. Both are the older style tube televisions. A larger one is upstairs in my office, connected to the only other connection to the dish, but it is one of those enlarged bubble screens and it takes a small team of personnel to move the sucker, even though by measurement standards it isn't THAT big anymore. 30" or 32" or something.

A smaller one is in the kid's playroom, not connected to anything other than a DVD player, where Bennett watches ONLY The Wiggles DVD's. The boy will watch nothing else. Hey...at least he is WATCHING something now. Only took 4 years. He used to never even look at the TV. But now...hey, Jeff, Murray, Anthony and Greg. Well, sometimes Greg. Now Sam. Poor Greg. But like I said...at least Bennett is watching The Wiggles and I couldn't be happier.

Both TV's are pretty old.

OK, they're not THAT old.

So what was the problem?

Twofold. We wanted to get Carter a place to watch TV that WASN'T my office because...well, he's a 7-year old kid who like to go through all my stuff. Can't get him to NOT do that. So he's constantly getting into trouble. Gotta get him out of there. Having him watch TV on the MONSTER is OK...but I also like to play games (though less of them after Operation: UnPlugged).

So we planned to get a new TV since they aren't THAT pricey for a smaller size that we could slide into my office, get a team to move the incredibly heavy TV down here somewhere and maybe have it as a back-up and then shift Carter to the MONSTER and me and my X-Box to the office.

That was The Plan anyway.

Until Friday afternoon, when my computer monitor went nutty and fried itself into peaceful oblivion. I write this from my laptop. Murder on my Ulnar, but waddya gonna do? Don't have anything to plug into the desktop right now. So the writing has to be done on this little guy for the time being, and any fundages planned for that television shift will have to be diverted to a new Monitor.

Tis the SEASON.

Bah...you know the rest.

OUT.

I Think I'm Gonna Hurl

2011-12-16T15:20:00.024-05:00

This week has been full of surprises.

And not just of the kind that have been spawned by keeping my head OUT of the world of X-Box Live. Though it has certainly helped to spend more time with the family, don't get me wrong, and I have made some amazing strides in getting to some things that have been languishing of late, and not just me in the role of 'Daddy'.

For example, dealing with the giant piles of junk in the basement that ALL got shifted around when our house started falling apart. Started making a dent in that the other night. Trying to get all that moved, organized, settled. Found a few things I thought we'd lost or misplaced. That's always nice.

Too bad it wasn't a wad of cash, and I'll tell you why.

Because right now, a wad of cash might quell my urge to vomit.

See, over at Mission: iPossible!, we ran an iPad giveaway over the past two weeks right? Well, at first I was like...hmm...I really screwed up here, because since I have been in La-La Land for a couple of months and not given this organization what I should have, and lots of other things in my Life, it is NOT getting the attention it really could be. SO there were not a lot of entries for the 2 iPads that Heather had managed to procure through donation.

But THEN...something very, very weird happened.

Deadline came for the contest. Had to randomly generate the 2 Recipients from a list of 22 Applicants. Well, first I had to actually disqualify one of the entries because of a problem with meeting the entry requirements. That by itself made me very, very woozy.

But then having to actually put down, in writing, and say to 20 other people that their kids are NOT getting iPads, when we spent the tail end of the summer telling 20 kids they WERE getting iPads? My hands, literally, were shaking and I felt like I was gonna puke.

20 got them. 20 didn't. I did not care for that little slice of numerical irony one damn bit.

It was tougher than I imagined it might be. So much so that I even questioned whether I ever wanted to do anything like it again. For a nanosecond. Then I wanted to start planning out parameters for a third Mission as soon as time permits.

I have to stay determined and stay focused and get some more folks involved.

But most importantly? I gotta remember...stay POSITIVE.

For me? Not the easiest of tasks. But not impossible either. I will simply have to put forth some effort. But I can manage it. Hey...if I can give up my X-Box controllers for a week I think I can manage it. And I never even mentioned in the blog (was too busy playing X-Box, 'NATCH) that two weeks ago yesterday was my THREE YEAR ANNIVERSARY from having smoked my last cigarette. Ever.

So yeah...there are SOME things I can accomplish when I try.

Sure, I could choose to dwell on the 20/20 numerical thing...OR, I could look at it this way. The numbers equating to each other don't really mean DIDDLY DOO-DOO. That's a technical term.

What matters, what REALLY matters, is number of lives changed.

Period.

And that number keeps growing.

Period.

As long as I keep that juicy piece of info at the forefront of my simian-like pea-sized brain, I ought to do OK, don'tcha think?

OUT.

An iPad Question (or 2) Answered

2011-12-14T12:00:00.013-05:00

Day Two of Operation: UnPlugged went well. I did not implode. That older boy of mine is smart as a WHIP. He can spell like crazy. I was blown away again sitting with him and his homework.

Tuesday nights are 'Bennett Stays at Grandparents Night' so it was just the three of us, and with me being emotionally available for a change, it was actually a little better all the way around. Carter enjoyed it. A lot. I really didn't realize what an absentee Father I had been of late to him.

He's such a great kid.

I'm going to introduce 'Daturday' each month to him after this weekend (we have a Christmas party). It is a new idea I have been toying with when it comes to trying to spend more time with him since he always gets the shaft because of Bennett's disability.

It involves him, me, and one Saturday a month where we do something super cool and utterly different. Since we don't do the breakfasts anymore since he doesn't do the Day Care thing, we should try something new, and up the ante.

But that's not the subject of today's blog. Over at Mission: iPossible, we're still running that giveaway on 2 iPads. It ends tomorrow. I was, and still am, surprised at how few entries there are. I blame myself completely. This Fall, like everything else, I let a lot of things slide, including that.

But if nothing else, I do not shirk responsibility. I let my community down by not giving it the time I should have, and it shows in the end result of what you are seeing unfold. All I can do moving forward is renew my commitment to it. Find the right balance between my family, my community, and me.

It's out there somewhere.

In the entry section of that blog post was a question. I didn't want to post the answer in the Comments, because the answer would be too damn long. I didn't want to create a new post there, because I still want the Entry Page to be the first thing people see when they go there until we start the randomized drawing when the deadline hits.

So figured I would answer it here, and link back. Sometimes it helps to have two pieces of Internet real estate.

The question came from Laura, which was:

This has to be the perfect place for my questions :-). I hear a lot about parents of special needs children wanting an iPad for their children to enhance learning and communication. I myself have a daughter with Down syndrome but as I don't have an iPad or iPhone I am curious as to what exactly the device offers. In what ways can it enhance speech articulation and language? Is there a monthly fee to use an iPad the way there is on an iPhone? Are applications expensive? Thank you very much to anyone able to answer for me. All the best to the entrants and providers! Laura

And so Laura...here is your answer, hope you were able to find your way over here to get it.

Your question is fairly vast. I'm not sure I can answer it very WELL, but I will give it my best shot. I will preface it by saying one thing I have learned from this experience is every child is different, so one's mileage from The iPad Experience varies.

That being said, it never hurts to investigate ANY option for communicating with your kid, if you can get access to it, right?

Let’s break down the question.

I am curious as to what exactly the device offers. In what ways can it enhance speech articulation and language?

A lot. In fact, as far as applications go, the sky is the limit as far as possibilities. There are some that are simple, some that are very intricate. Some that will just help with getting a child to integrate with the device, ala making cool lines and images on screen, others that offer really intense learning. All depends on where you and your child are in the process of development. And like I said, it does vary.

Example, one of the Recipients from Mission One was farther ahead in development, though still delayed mind you, I’m not sugar coating anything here, but she, with this technology, zipped through learning ABC’s in a matter of days. And she struggled with it previously.

Another of the Recipients was in a whole different ballpark. His delays are a bit more on the severe side, so while he isn’t really using the iPad yet for any kind of sophisticated learning, it is providing something for him...INTERACTION. Something that, due to his disability, he had not been able to do previously in a fun way with anything.

One of his parents wrote about how overjoyed he was by this because for years he had never seen his son even PLAY with a toy because of his disability, and for the first time his son was interacting with something and HAVING FUN. It was monumental in his life. For both of them I think. So while each experience was very, very different, the one thing that binds them both is opportunity for growth, for change.

And there is one reason for this, and I am no expert, but my understanding is this…it is because of the touch-screen technology.

There is some…blockage, some mental barrier that makes it difficult for any mind, particularly one that struggles with disability, to make a connection between what is seen on a monitor and the manipulation of a mouse and a keyboard. Again, this is just my basic understanding, I am by no means an expert, I am just learning myself, although I may actually do an about face and start studying this kind of thing more if you can believe it, because I may want to start doing Speech Therapy now that I am going to have to switch careers.

Anyway…the Touch Screen eliminates this barrier, and for some reason, it makes sense to the human brain, and especially to one that struggles with disability. And why wouldn’t it? You point. Your finger moves this. Your finger moves that.

It seems a reasonable explanation to me.

Is there a monthly fee to use an iPad the way there is on an iPhone?

Not necessarily. But it depends on how you intend to use it. There are options with an iPad, but not on the iPads that we are giving away on the Mission: iPossible! website. The ones we give away do NOT have 3G capability. They only have Wi-Fi capability.

I hope I am not insulting your intelligence by over-simplifying the explanation, but I will break it down for those not in the know. Wi-Fi essentially means this. You have your iPad. You are sitting in a Coffee Shop or your Home and a Wireless Network is being used. If you have a password to that network you can access the Internet. That’s Wi-Fi. It means a router is somewhere nearby that your machine will jack into wirelessly, but the ROUTER is accessing satellites in space or nearby towers that are.

This carries with it no monthly fee. Nice, right?

3G is when the iPad itself is acting as the router and IT is accessing the satellite in space or the towers, and you can be sitting in a park or at the football game or at Grandma’s House (who has a black and white TV and no Internet OR cable) or in the car and access the Internet anytime, anywhere. Essentially, it is a gigantic cell phone that you probably can even use to talk on (via Skype I’ll bet).

This carries with it a monthly fee, just like a cell phone does.

But those kinds of iPads are not the kind of iPads we are giving out. We are only giving out the Wi-Fi versions.

Are applications expensive?

Some are dirt cheap and some are absolutely free.

Some are very, very pricey.

There are some websites that specialize in applications for Special Needs. I know of one, called Apps for Children with Special Needs, and there is another good one as well but the name escapes me right now, I am sure there is a parent here who can chime in with the web address.

Again, mileage varies on apps. You don’t need to go with Prolque2Go, the expensive ‘gold standard’ in communication right now, right away, you can ease into apps as you familiarize yourself and your child with the device and find out what works and does not work for you.

And, I do know that the A4CWSN site often runs free specials on apps, and is you join Facebook groups and clubs people are always announcing specials and sales. Community is everything when it comes to this stuff. People are always helping people.

One such Facebook group is called Buddy Cruise, a Non-Profit organization where the parents of Joseph, another one of the Mission One Recipients, are involved. Pamela, Joseph's Mom, just let me know about an Apps giveaway day that their Facebook page will be hosting that is, I believe, in partnership with Gary James A4CWSN site (you'll have to correct me if I have that wrong, Pamela) on December 23rd, all day.

So that's ANOTHER resource to join up with and be a part of.

And the Bloggers are always sharing.

I know Danielle blogs ALL THE TIME about Apps she is using with her son Trevor on Happy Being Trevy, and that’s just the one that sprang to mind first...there are many, many more...and all it takes is spending an afternoon web surfing to find source after source after source.

You keep what you like, drop what you don’t, and you find your niche. Sorta like Life.

Hope that answers your questions. Probably TMI, but hey...that's me, in case you hadn't figured that part out by now. :)

OUT.

Unplugged

2011-12-13T15:25:00.002-05:00

Sometime in the Fall, I can't remember how or when, I started to feel like a big steaming pile of...yeah, do I need to say it?

And ever since, this blog has suffered...oh my has it suffered. It has limped along, getting weaker by the day, losing followers, losing readership. Every so often I give it an in injection of...something, but it is like being a bad partner in a relationship.

I'm never giving it enough. And I know it.

Here's the real rub.

Thing's haven't been totally horrible. I mean, the same crap exists now that has existed for awhile, the same junk that has been mind-trippin' me for months. But things, from a day-to-day kind of perspective, didn't suddenly take a nose dive or anything. At least...I didn't think they did.

So why did I plug myself back into my X-Box like I did back when things really were VERY bad? Is it as simple as just being addicted? Or is the answer more complicated?

Dunno. It is usually the latter. Why does it always have to be the latter, huh?

Damn latters.

Some have argued, and by some I mean some friends of mine, the very few I have left, that I actually DO have a lot on my plate that is troubling me, that things are still kind of bad I'm just not seeing things as badly on a conscious level, but my SUB-conscious mind is, and so my retreat to fictitious worlds like Pandora or Gotham City or other such digital domains makes perfect sense.

But that kind of retreat can become so destructive for me, and can be such a powerful pull, like drugs or booze for some people, especially when I make a decision, conscious or otherwise, to face the obstacles in those places with much more regularity and voracity than I do those in my regular, everyday, real life.

So I made a DIFFERENT kind of decision late last week that I needed to do something a little...drastic.

Yesterday morning, I gave The Twins (my two X-Box controllers) to my wife for safekeeping and had her take them to work. For one week, they will be out of my hands. For one week, I am unplugging myself from The Matrix and eating that shitty white paste and wearing ripped up sweaters instead of wearing black latex and sunglasses and doing bad-ass karate and jujitsu moves on Agent Smith.

But it has to be this way.

Because as attractive as The Matrix is, it is still and always will be...The Matrix.

My future still waits for me, no matter how often I choose to avoid it. And holy crap do I choose to avoid it often. But it is fear, kids, plain and simple. You have this mountain of SHIT standing in front of you, and it keeps getting bigger not smaller, and your first instinct is not to start tearing into it.

Check that...MY first instinct isn't to start tearing into it.

There are some Men whose first instinct would be to do just that.

Those Men are far, far greater than I. Or at least, they are not as damaged. Those are Men who are leaders, pioneers, entrepreneurs. Those are Men I deeply admire and respect. Men like Bill, or Steve, or Paul, or Jay, or Chris, or Mark, or Richard, or Mike, or many others that I just can't name because I'm not allowed or the list would just go on forever.

Those Men? Those Men are just not me.

I say this not to self-deprecate. Please do not misunderstand. I am not saying I am not a 'good' this or 'good' that. I have my value. I recognize that I have certain strengths and that I have accomplished quite a lot of things, blah, blah, blah...what I am saying is that I recognize one of my greatest weaknesses is my lack of focus and my tendency to put things off or Matrixize my mind when faced with too many things.

Inherently, I am not lazy, and that's the Truth. Ask anybody who has ever seen me working 16 hour days. If I am passionate about something, I work my ass off. I'm dedicated, I am a workaholic, and I do have some other unique and interesting characteristics.

But for some reason that baffles me, and maybe this is something I have always been, maybe it is something that is new, I get locked up by stuff. I get bogged down. And I have to 'work through it'. To some people, getting through obstacles, or around them, or through them, it comes naturally. For me? My personality type is more calculative and much more time-consuming.

I resist, and always have, falling back to the ADD diagnosis, which I have and take medication for. I don't know why but I hate using it as a crutch despite its realness.

Maybe it is the same reason I resist falling back on the stuff that went on when I was a kid that may or may not have resulted in PTSD, or even blaming anything that is going on with Bennett, or ANYTHING like that...I just get a bit weird about that kind of thing.

I want to believe that I have the ability to have control, even though I can't seem to maintain it.

It may not be he Truth, but I want to believe it.

Of course, with that comes the disappointment if and when I meet any kind of lack of success, because in the end you don't have anyone to blame BUT yourself. But for some reason, I prefer that over trying to shift the blame to a diagnosis. Call me crazy (it's OK, I probably am) but there is a certain logic for me here.

But all ramblings aside, trying to unplug from the un-reality of The Matrix and stop logging so much X-Box time was something I had to do.

Day One, yesterday, was wild. I actually spent a lot of time with Carter in the evening. More than I have in a while. And it was nice. I sat with him and his Mom while Carter worked on some 1st Grade homework and was blown away by the stuff he was doing.

I mean, it was simple stuff I get that, but I'd had my head up my butt for the entire Fall I didn't know he could do all that he was doing! I was blown away. Told him so. And what was coolest of all was that he was blown away that I was up there taking an interest.

Good call to put on the raggedy sweater and eat the white pasty gruel?

Yeah...I think so. Should be a fantastically pleasant week.

OUT.

Christmas iPad Giveaway at Mission: iPossible!

2011-12-02T12:40:00.005-05:00

If you've followed this blog for any length of time, you pretty much know the full story behind a charitable foundation that sprang forth from an iPad contest gone disastrously wrong over the Spring and Summer earlier this year. That organization, which came to be known as Mission: iPossible!, went on to complete its Mission One project at a pace I think everyone, myself included, was stunned by.

In some unreal number like 76 days or some such, the Special Needs Community pooled its collective resources, came together and raised slightly more than $11,000.00 to purchase and ship 20 iPads to 20 kids with communication-related disabilities.

It was a very diverse mixture of folks, which from a personal perspective I found interesting, because it allowed me a fantastic opportunity as a Special Needs father to see a lot of aspects of how the technology helps kids from a lot of different perspectives.

I gained as much from the experience as I put in, maybe even more. But I have written about that ad nauseum, I'm sure most people are fairly tired of my going on and on about what the entire experience has meant to me.

What's most important, most paramount, it what the experience has meant for the kids. I still hear from some of the families.

After the first Mission was over, we took a break to assess where we wanted to take the overall organization. We had something in mind, and needed to wait on it because we needed some more info. In the meantime, while we figure things out, Heather, author of Little Wonders, managed to have 2 iPads come her way, and so we decided to give those away to 2 families for Christmas.

That will be our Mission Two until we can get the details worked out on the larger project.

All the details can be found over on the Mission: iPossible blog. You know the place. It's the one where you hear the crickets chirping. ;)

So if you can, spread the word, let people know that the iPads are already in hand and ready to be given, we don't even need to raise the funds. Otherwise, Heather is just going to send them to me and I will use them to prop up one end of my sofa since it is uneven and they are the PERFECT width.

OUT.

I Thought That No Tonsils Meant No Sicky Sicky?

2011-11-30T12:00:00.001-05:00

Isn't that title sort of self-explanatory?

But I can't just leave it at that. Besides, this is BLOGGER, not TWITTER. You know, I don't do the whole Twitter thing. I don't Twat, or Twirt, or Twoot, or whatever they call it. Hell, I don't even do the whole Status Update thing on Facebook very often, though I do use it on occasion.

Nah, were I a Super-Villain I would probably be The Riddler.

Mr. Verbosity. Very prone to lots of talk, talk, talk. Or in this case write, write, write. Edward Nigma...at least as he is portrayed in the game Batman: Arkham City (arguably my favorite game of the year and easily on my top five ALL TIME) really can't shut up, and sadly that would be me.

And yet, lately...one would be hard-pressed to find me around these parts.

I was going to deluge last week. I had my whole LOFTY 2011 ready to go. Remember that from last year all Ye Faithful? My List of Thankful Things? Two things made me not do it.

One, my technology issues. Slowed me down to a crawl last week, in what was a short week. So there was no time to finalize all the photos for it. Had it written but there was no time to finish it before a Thanksgiving trip. The second reason I canceled it was after reading a post from a fellow blogger that made me think I just didn't want to.

Not that I wasn't, or am not, thankful and grateful for a great many things. In fact, I plan to re-purpose that list for a revised new End of the Year Tradition. Instead, the post I read just made me go inward rather than outward, and that wasn't a bad thing. Sometimes it might be important for me to do that.

Maybe not everything on my mind is meant for sharing. Capise?

And now I'm just sick. Been coming on me like a trickle as of Monday. Then a creek on Tuesday. Now a river today. Sucks.

Sucks. Sucks. Sucks.

I thought that I would be spared these kinds of colds for a while. But I guess even having your tonsils out does not make you immune from cold viruses. I will say this though...at LEAST I don't have those organisms in my throat that I have to deal with during this cold. Previously, when I had the tonsils in, and they were trapping all my goo, those tonsil stones would just get unmanageable.

But now? All mucus just goes down to the depths. Nice.

Hey...gotta add that to my Year-End List...

OUT.

Amazing What Happens When Technology Fails You

2011-11-23T13:28:00.000-05:00

You don't realize how much you become dependent on a technology until you can't use it.

Typically in this House of Dripping Walls, it is when the power goes out, which happens quite a lot. And it ALWAYS happens during times that leave me shaking my head. Could be raining like the 40 Days outside and the power doesn't flutter a bit, but on a sunny, moderate day in mid-May suddenly WHAMMO...no power for 3 hours.

We live on the shittiest grid in the county.

But I'm not talking about power, I'm talking about other technology. This time I am talking about e-mail. I have several e-mail addresses, all used for different things. Many for my freelance business and part-time eBay stuff, others for Mission: iPossible, and still others for personal use. All filtered to this computer through a single e-mail program for my convenience.

I maintain my own FTP and a few web addresses for all this stuff, and the main host/server that I use was getting pummeled by junk mail lately, so in an attempt to 'fix' the problem, the host/server installed some kind of filter on to my account on Monday afternoon.

The problem is that it is FILTERING EVERYTHING!!!!

I am not getting a single MUFUGGIN' e-mail sent to my computer at all!

So now, trying to get it reverted BACK to what it was is taking forever, meanwhile I am in deep, deep shit trying to manage stuff, manually check some places to see if things have shown up where they should, though I know I am missing a TON of stuff, and BTW what the hell happened to all the correspondence from Monday to right now? No one knows. And why does it take so long to get an issue like this corrected when it was so fast and easy to get the freakin' filter turned ON in the first place?

WHY IS IT SO FUCKING HARD TO SHUT IT THE HELL DOWN!?!?!

OK...I'm done.

OUT.

Two Pieces of Buried Treasure

2011-11-21T09:00:00.001-05:00

I am a Hoarder.

I've gone over this before. And the truth is, Thank God I am. It has served me very well in these dark days of self/un-employment as I try to figure out where to steer my career now, because so many of the things I have hoarded in my life can be sold off as needed to make ends meet.

I hoard personal stuff too, though. Photos, letters, and not just those made of paper. The digital kind. I recently stumbled across both types, each related to the other, while I was trying to organize what is, essentially, the un-organizable.

One was a small cache of ACTUAL physical printed photographs of Bennett when he was in the NICU, that first week or two when he was born. I did not take them. I think his Aunt Mandy did, though I am not entirely sure. And I am not entirely sure how they ended up in my hands either.

But they did, and I found 'em, so I eventually got to them in my rather large 'TO BE SCANNED' pile.

The other find was that of the digital variety. I might have mentioned that I used to blog at some other places, like Palisades Toys, and after that on a blog called Grey Matters for a small business I started called Creatus Maximus.

While Creatus Maximus exists now only as the branded name for my freelance work, it used to have its own website when it was an attempt by me to facilitate the production of artists' products, but I ultimately made some stupid decisions and couldn't get over the humps needed to make it work.

Hindsight? Yeah...

Even though that CMX website is long gone, I have a textual archive of the Grey Matters blog, thanks to my good friend and former Palisades and Creatus Maximus mate Chad McCoy who, VERY sadly, has been more in touch with me recently because of a seizure event his daughter had.

I am the 'Resident Expert' on Epilepsy when it comes to my friends. His daughter had what I think was a febrile seizure, and so far only the single event, but we are still sifting through some stuff, and not sure how much or how little he would feel comfortable with me sharing.

So thanks to him I at least have the text, and the HTML references to the images that accompanied the text. AND, since I saved all the images on my computer, and labeled everything by a very specific filename with a date stamp in the title, they are, naturally, easy to find and match up.

If only the PALISADES Daily Bit stuff I have saved was that easy to manage. I was not that web savvy back then. It is so all over the place it is frightening, and much of it is lost, too, since a TON of the Made in China stuff was entered directly into the website by hand, with no copy saved by me in the computer, and since the website is gone so is the content.

I WAS A FOOL.

Be that as it may this weekend, Saturday, I stumbled across an entry from the weekend that Bennett was born, then Sunday, the VERY NEXT DAY after I found these new photos...that I had previously not published and forgotten I even had.

Of course I SAY previously unpublished, because even though I went back and looked through the past year of Bennett-labeled posts I could not find these, who knows? I might have published them...but I think I haven't. I did learn one thing. JESUS I repeat myself a lot. No wonder no one comments. It's like watching re-runs of Gilligan's Island.

Anyway...here is the text, with the photos peppered about.

Grey Matters: Unexpected Events
Sunday, November 11, 2007
What a weekend I have had. It's amazing how much life changes on a dime when you never really expect it to.

My wife is expecting our second son in the first week or so of December. On Friday night, she went to bed feeling uncomfortable, and at 3:30 AM she was waking me up saying that we were going to the hospital. She was in labor and she had called her doc and that's what he told her to do.

Honestly, when we got there, we both thought that it was a false labor. The doc figured it probably was also, and gave her some medication designed to stop the contractions in the event that it actually turned out to be just that.

It wasn't.

The meds did not work, and so by 8:00 in the morning she was being prepped to go in for a C-Section. It had to be that way because that was how she had our first son, Carter, since he was breach, butt down, and couldn't be turned.

The last time she had the procedure, I had a grand daddy anxiety attack and had to leave the delivery room and lay on a gurney in the hallway outside. This time, they all talked me into staying out completely, so as to avoid any possible complication with me hitting the floor.

I hated that, though I understood it, and I stayed out. I got to see the baby VERY briefly, but then they had to whisk him up to the NICU, that's Neo-Natal Intensive Care Unit, in case you didn't know that, and that is where he has been ever since.

He has to be given oxygen, fed through a tube intravenously, injected with antibiotics, and kept fairly isolated in an incubator. While his chances of reaching a point of 100% normalcy are good, I gotta be honest with you and say that there is nothing that prepares you for seeing your baby hooked up to junk like that, especially when you can't really touch him for long and you can't hold him.

It has been tough for Jen, and for me...though she was able to hold him for a little while early this morning. In addition, we can't take him home for a week or two or possibly more, so you can imagine how difficult it might be.

At first I wasn't going to show these pictures, but I think in the end I decided to because I can't expect to treat his birth differently than I would if everything had gone really well. If it had, I would be posting some pictures and talking about the experience and him, and since it didn't go well I should still stay as true to myself as I can. But the pics are probably much harder for me to look at than they would be for someone else.

That's to be expected.

So that's it really...it will be a more difficult time for now, at least for a little while, but as of 8:25, at 5 pounds (TEENY), we added Bennett Leonidas Lilly to our family.

Hopefully, soon, we'll get to bring him home.

Later,
ResidentLilly

You know I tend to always cringe when I read older stuff of mine. I didn't cringe as much when I read that, since it is, at least, from the heart.

But a couple of things leaped out at me.

One, the fact that I was convinced that everything would be 100% normal. Fact is? IT WAS. For 15 months, after we got home from the NICU, everything was 100% fine. We had NO idea about the time bomb being built inside that boy's brain or what catalyst would set it off.

The other thing I notice is that I was holding back. A LOT. I've changed in that regard.

Ya THINK?

I didn't reveal how bad things were for Jen and I. How I was not supporting her at all. How shitty of a husband I was at that time. I would today. I would use this space as a place to work through that and try to come out better on the other side of it somehow. But then? I think I was still timid about revealing too much about the darker aspects of me. Maybe I felt like I had an image to maintain or something.

But now? I just don't care.

No, scratch that. I care, certainly I care, and I do take a risk by opening myself up like this, but it is the path that I choose and I find it the most comfortable...I just have come to know and ACCEPT that I am flawed human being who makes mistakes, but that doesn't make me a bad dude.

Not too much. ;)

Owning my mistakes and being open about the crap in my life is what works for me. Doesn't work for everybody else and that is totally cool.

But it works for me, cause I get to own the good stuff too. And I like that.

Anyway, just thought I'd share a bit of that buried treasure. Maybe it will inspire some of you other Hoarders out there who take crap from your significant others to dig up some stuff like this and use it as a shield the next time you need a little 'D'...

OUT.

Birthday Photo Deluge

2011-11-14T12:00:00.005-05:00

I slammed my Facebook account on Sunday with a ton of photos, thought I'd smack a few up here, not so much because most people who read this don't link to my Facebook, though many do not. Mostly because I REALLY wanted to stop seeing myself as a cheerleader and FAST.

Bennett lately simply does NOT want o look at the camera when I am taking pictures, so I find myself shooting a TON of shots that go nowhere. Also, my colors are way off these days, and I have no idea why. Settings on the camera maybe, I dunno. More likely USER ERROR.

I'll have to look into it. Sometimes I get the thing so jacked up I have no choice but to just go in and reset everything back to the factory pre-sets and start over.

Of course, it wouldn't hurt to read the frikkin' manual.

OUT.

Run, Lola, Run!

2011-11-12T15:00:00.003-05:00

And everybody else who is participating in today's Santa Barbara Marathon, but particularly Team GSF. It would take a lot for me to humiliate myself and dress my little guy up like a Cheerleader, but since I could not be there in person, I can only be there in spirit and cheer them on.

Team GSF, who you can read all about here, is a group that was brought together by The Gwendolyn Strong Foundation, and by now any of you reading these pages should know who Bill, Victoria and Gwendolyn are, but in case you might be new they are the amazing family who reached out and helped out Heather and I and the rest of us and essentially made it possible for us to put that Mission One project together over at Mission: iPossible! by allowing us to take a small space underneath the umbrella of trust and security of their organization.

Without that? I don't think the first Mission is over yet. It was that important.

An amazing family, an incredible foundation, and aside from the monumental work they do? They're just damn good PEOPLE.

Wish 'em Godspeed today.

OUT.

Bizarro Birthday

2011-11-11T12:30:00.012-05:00

If there is one thing that defines my existence, and maybe always has, it is my difficulty with navigating through the complexity of my emotional states of mind. In fact, so hard do I find this task, that too often I choose not to do it, and I instead ignore my feelings, or suppress them, or disengage.

Or play SHITLOADS of X-Box 360 and blow off the things I need to do altogether! WOOHOO!

Yeah...how's that workin' out for ya?

This navigational difficulty has been a defining characteristic of my life, as many of you have read.

These feelings never stay submerged or repressed for long however. They always find a way to come out. Sometimes they will emerge as explosive bouts of anger and all mailboxes, everywhere, will cower in fear, or they will emerge as waterworks, with Yours Truly collapsing on the floor in uncontrollable sobs. I suppose it is the price I pay for not choosing to lead a more balanced emotional life.

I am writing about this because yesterday morning I realized that I had not cried for quite a while. Not really. Not since August, when I lost it over The iPad Incident. I have had some tears, mainly inspired during my most recent re-watching of the LOST TV show, but not outright, full-tilt crying.

Yes, I used the term 'had not'.

I broke my streak yesterday.

What's strange is that the motivator came from the Leftiest of Left Fields.

I awoke in a great mood. It was Bennett's birthday. He turned 4 years old. And although he isn't REALLY 4 years old in his head, I didn't care, and still don't. I'm was not going to let that get me down. I refused to. How's THAT for evolution, BABY?

My interactions with him that morning were pleasant and warm, and I was NOT going to stress over the fact that he had NO IDEA AT ALL that it was not his birthday and doesn't even understand the concept of one. I was not going to dwell on the fact that he doesn't understand what 4 years old means, or that he still, when asked 'Bennett, who am I?', he calls me 'Kee-KO' after the Home Health Aide.

Denial is a beautiful thing, isn't it?

Nope, because I am all about celebrating the fact that the night before he came up to me and guided me by the hand to the bathroom and proceeded to bomb Dresden in the toilet bowl, squealing 'Puh-PAY!' after every delightful grunt. Nope, because I am all about being overjoyed that when I say 'Stand up.' to get his shoes on, he stands without hesitation. Nope, because when I say 'Ben-Ben, give Dadda a kiss.' he will grin, lean in and give me a kiss, wring his hands together, giggle like the Joker and then run away.

It's the little things that you learn to appreciate when you don't have everything working as it should with your kid. And man-o-shevitz...I love that kid, and I deeply, wholeheartedly, with everything I am...appreciate how lucky I am to have what I have with him.

And if I ever need any reminder of what I am missing? All I need to do is peek around the corner and eventually I will run into Carter, my older son. He is a typical child. And even though every typical child comes with their own set of variables, and even though even a typical child can grow up to be Charles Manson or Jeffrey Dahmer, there is definitely no reason at all why I do not understand how extra lucky I am that I have this to cling to when things seem their bleakest.

Sounds pretty balanced right? Sounds fairly upbeat right? So why in the name of Hell's chicken was I collapsed in a heap crying yesterday morning?

Because I am one weird mufugga, and I have an unnatural attachment to people I have never met.

See, this Special Needs Community, which needs a better name cause I hate that one, is, or rather has become, a sort of family to me. And with a few exceptions like Elaine and Joyce, I have not had much opportunity to meet these fine folk in the fleshy flesh, and yet I feel a bond with many of them as deeply as any bond I feel with friends I have known all my life.

Even with those I may only talk to on occasion, or not at all.

It is such s strange phenomenon. But this Fratenasorority is unlike anything I have ever known before. The other day I was talking to Elaine about it. She went to an event with some other Special Needs Moms to Sesame Place, an event that was discussed on a private Message Board called Brain Parents, of which I am a member.

I could have joined in and attempted to go to this event and finally met the likes of Danielle, who wrote a terrific blog about the whole trip, and Sinead and others, but unfortunately we in Lillyville are really struggling in a major way and could not afford it. I had to cancel the trip to see my Mom for Thanksgiving, so no way could I afford to take Bennett to Sesame Place.

So I kept quiet out of embarrassment and just watched in awe as these people got together and wished I could have been a part of it. Maybe. Someday.

But Elaine said something about the experience that rings true most of the time. When you meet people who are in these trenches with you, there is such a commonality that it is almost like you have known each other all your lives.

Take Heather for example.

When she and I first started talking to each other about the whole iPad Contest Gone Wrong, which eventually turned into Mission: iPossible, that first phone call was EFFORTLESS. And it was only around halfway through it that we even realized there was a Truth to it that neither of us had picked up on. It was if we had known each other before. She was like a sister, a dear friend I had known since I was a kid.

It was the very same way all the way through that entire experience. Any time I had the good fortune of speaking to anyone on the phone, any of the parents who were on the Recipient list, or even some that were not, it was so easy to talk to them. All because of this ONE common trait that we share.

Our kids are in distress.

Isn't that crazy?

Well, call me crazy then.

Yeah sure, there are exceptions, and I know there are feuds, and disagreements. And that's a part of community too. I wish it were NOT true but it is. But for the MOST part, it is a good thing.

Somewhere in here, I had a point. Oh yeah...why the Hell was I crying?

Because this guy, this SingleDad and one of his posts in particular, just got to me yesterday morning. And although if he reads this I know he's going to be perturbed that I allowed myself to get jacked up like that, especially after he followed up with a new post with a very positive message saying that he was OK and that there was a lot of good in his life and that he was suffering from Sleep Deprivation among other things, it just bothered the living shit out of me that things were like they were for him and his kids.

Of course, now the fact that he is getting so many offers for tail I am jealous as all get out, but hey...I'm married...and the grass, well, it is ALWAYS greener, don'tcha know. And besides...he has very often commented on the shoes on MY feet and the blessings I have with Mrs. Blogzilly.

Now, he wasn't the SOLE reason for the tear-fest, mind you. Only the catalyst. Clearly I have a few things on my mind.

It was worse because Carter was waiting for the bus, and just like laughing in Church, the more you try NOT to do something the harder it is to actually DO it, so the minute I got him out the door it was like the fly on a fat man's pants on Thanksgiving. The buttons started popping off and I had to cut loose.

So I did.

Why then? Well, like I said, I had some emotional constipation, and was bound up in the Express Thyself department. There have been some things wearing me down of late I haven't discussed much here. Why was he the emotional enema, so to speak? I dunno...aside from the obvious Man-Crush, I guess I was just sitting there wondering why this guy, who I happen to have a great deal of respect for, got SUCH a shitty end of Life's Great Stick when it comes to the Dadness. He had a terrific role model of a Father, who recently passed away, and at least from the cheap seats it seems like SingleDad is perfectly equipped (AHEM) to handle Fatherhood of a typical child very well.

In other words, he would bring great things to the relationship. And I think it would be fairly effortless for him.

And yet, here I am, on the other hand, a fucking MESS when it comes to that scenario. If Dickens were writing the story of my Dad's it would be titled A Tale of Two Shitheads. And the two of them in combo worked me over but good. And as much as I struggle with the challenges of Special Needs Fatherhood, I struggle even MORE with Typical Needs Fatherhood with Carter, and it is work, really hard WORK, to break through barriers I have to be emotionally available to him, to spend time with him, and express things I need to with him ALL because of this fucked up baggage I carry.

Where is the balance in this? How is this fair?

But I feel like that about a ton of stuff, not just with my Digital BFF.

So it hit me the wrong way, and it triggered an emotional moment, one that was probably overdue. Needed it. Purging some of that stuff is never a bad thing. To me anyway.

So thanks, SD, for helping me to get to my inner child.

If it means anything at all. When I think of 'SD' as it applies to YOU, my friend? I think of SuperDad, not SingleDad, and I imagine a giant red 'S' on your chest and you wearing your underwear on the OUTSIDE of your pants. And I think, typical child or not, you are a beautifully flawed, fantastic father and a helluva human being. And I would give anything to see you get all the things you rightfully deserve.

You are the definition of Good.

And so, after I got up and dusted myself off (MAN I have a dusty floor) the day went on, and then we had a bit of a get together for Bennett later in the evening. He got a bit overloaded, and his mood was AWFUL because of a nap we had to jolt him out of.

Waddya gonna do? It's just another day. There were some good moments, and he did eventually level off.

Learned a valuable lesson about him too.

Slow down with this birthday and other 'event' type stuff where we try so hard to do it in the 'typical' way with him.

As much as I WANT to give him multiple gifts on his birthday, I think I do that more for Carter's benefit than Bennett's. Or even my OWN benefit, for the experience of it. And frankly? It just freaks Bennett out. At Christmas, I am going to pull the reins back and just give Bennett one thing. MAYBE two. Let him absorb it, get into it, enjoy it.

Or you know what? This Christmas, maybe I'll just get Bennett a Kippah and take him down the Jewish road for a while, maybe go the Hanukkah route. Don't they give one gift each day for like twelve days or something like that and eat knish? If I passover such a great idea I would be such a shmendrik. I have just the chutzpah to do it, too, and don't you forget it.

Sounds kosher to me! Oy vay!

SHALOM.

Fate or Coincidence?

2011-11-09T11:00:00.002-05:00

It is a question that I ask myself often.

It is a debate I often find myself engaging in with a dear friend of mine, one who I have written about many times in these pages, a man named Richard, author of Daddyspeak. Richard is a very spiritual dude, and he and I often speak of the G-Man, though in very, very different terms.

Richard is much more literal in his beliefs than I am. I have to warp and distort things in order to fit into my brain. I have to make things work in order to have Faith. But I have gone over that before.

My thinking is...hey, whatever works for you, great.

Same philosophy applies to anything that is good for you, doesn't it? If you prefer solitude and watching television and a certain level of privacy and you like to jog on a treadmill indoors, but that is what you do for exercise, then that is JUST as good as the other guy who enjoys going out to the local park and jogging around the trail, sucking in the sights and sounds of nature.

Because at least you are both DOING SOMETHING GOOD for your bodies and minds.

Anyway...I do not know how I feel about Divine Intervention. I struggle so often with the notion of it. I struggled with it during the entire iPad Incident I wrote about before. I think I will struggle with it all my life.

And that is OK. Struggle is probably good. It means, at the very least, that it is on my mind, and I won't argue that this alone, all by itself, is a GREAT thing.

Heard about this today, and it got me thinking about Fate vs. Coincidence. It is a story about a man who stopped along the side of a road to help two stranded women change a flat tire, and the events that occured afterward.

Good Deed Repaid on Wisconsin Highway

You tell me.

Fate? Coincidence? Who knows? Truthfully, it doesn't really matter what it is. It is still GOOD.

And THAT is what matters most.

OUT.

The More Things Change

2011-11-08T20:01:00.005-05:00

Today was an Election Day here. I did not vote. I did not care.

What does that say about me?

Did my one turn as an attempted citizen sour me so much on the experience that I am now no longer really qualified to call myself an American? I dunno. Some might think so. I might think so.

I just...well, why repeat myself?

I realize that this is a terrible thing to say, and an example for my kids that I absolutely, positively do not want to set.

But I'm tired. Tired of the rhetoric and the BS that does nothing for our economy while two very different groups will not work together to help each other as each struggles and maneuvers for control and domination and things go from bad to worse...to worse-worse.

Tired of watching all the bills go up, tired of watching my wife work for a company that takes her for granted and hasn't given her a raise in four years. Tired to have made such terrible choices in my own life involving career to where I am now, at 44, in a world of confusion over what in the world I am supposed to do to somehow change direction as I eek out a living doing...the things I am doing.

I'm just tired. Struggling is hard, and it takes a lot of the energy out of a lot of things, not the least of which is my marriage, which always suffers from it. That's true in typical and non-typical households. Money, and/or lack thereof, strains everything.

Financial considerations forced me a week ago to cancel a trip to Arkansas to see my Mom for Thanksgiving. That was a huge, HUGE emotional setback. I wanted to see her. She wanted to see me. I smelled MASSIVE, down-home rejuvenation. Or was that manure?

But times are just too damn tough.

For a LOT OF PEOPLE.

But you know what? I do remember to count my blessings. And I am going to put together my List of Fifty Things. It is November after all. And I do have fifty. Hell I have more than fifty. And one of them is that despite being stuck here in Columbus and what that forces my career into...I cannot ignore, not for a second, and must stand in AWE at how good Bennett's benefits are.

I know of no one who has it as good as he does when it comes to Therapy hours.

One of these days, I will have to tell the VERY long story as to how that all went down. Apparently, is is NOT because of where we live. It is much, MUCH more complex than I ever imagined.

Anyway, I'm done with today's bitch-fest. I needed one. Although I try to focus on the positives in life more these days, occasionally I need to vent too. This is, after all, my digital, and totally free of charge, head shrinker.

And the doctor is ALWAYS in.

OUT.

Bullets & Broomsticks

2011-11-07T13:45:00.001-05:00

Bennett is sick today.

Pink Eye.

You ever notice how the Medical Community likes to name stuff in a very casual way? 'Pink-Eye' almost sounds fun, doesn't it?

It ain't.

I know because a while ago I actually got it. I hadn't had it in around 15 years. So I know it hurts, but we don't walk around calling it Conjunctivitis like we really should. Come to think of it, I guess the Medical Community really didn't call it 'Pink-Eye'.

We did.

OK, so I am not really over the whole Infantile Spasms thing yet. So sue me.

Speaking of getting over stuff, a couple of years ago, in the 2008-2009 NFL Season, the Pittsburgh Steelers made history and beat the Baltimore Ravens three times straight. They beat them two times in the regular season and then again in the playoffs, in the AFC Championship Game.

Not once, not twice, but THREE TIMES A LADY.

That stung. A lot. More than Conjunctivitis.

You might not know this tidbit of history, they also managed to set another record by beating us in three unique uniforms. They beat us in their Home Jersey, their Away Jersey, and in their Retro Jersey (the one with the throwback yellow helmets and white pants).

I'm just full of information today aren't I? Well, I'm passionate about a few things in life, and this is one of them.

The Baltimore/Pittsburgh rivalry is arguably becoming one of the best in the modern day NFL. ESPECIALLY with Peyton Manning getting a bit older and especially this year with him not even playing, the Patriots/Colts rivalry is taking a bit of a powder. With the Packers being SO great, the Packaers/Bears rivalry is also very, very cool.

Because in order for a rivalry to truly BE be a rivalry, there needs to be intense competition, and the one thing that these two teams bring to the table is COMPETITION and intensity. That's why the Browns/Steelers rivalry is kind of dead. The Steelers handle the Browns the way MOST teams handle the Browns. Easily.

But with the Ravens/Steelers, most of the games are NOT decided by that many points. Turnovers are key, defense is critical, and best of all the two teams have a genuine distaste for each other, both on and off the field.

It's fantastic sports entertainment.

On Opening Day of this season, the Ravens handed the Steelers one of the only real lopsided losses the Steelers have had in a very, very long time. I considered it a very flukey thing, one that the Steelers would probably not suffer again. And they didn't. In fact, moving forward, the Ravens are the ones that looked suspect, losing games to some really BAD teams while the Steelers looked like the Steelers ALWAYS do.

Damn good.

Which is why when last night's Steelers/Ravens re-match aired on Sunday night, AT Heinz Field in Pittsburgh, I was terrified to watch the thing. The Ravens had not been playing great, their O-Line was a mess, and Flacco was not the Quarterback that he was on Opening Day.

The Steelers? They just beat the Patriots. Roethlisberger just out-Brady'd Brady. Mike Tomlin, the Steelers head coach who looks like Joh Yowzah from Star Wars: Return of the Jedi, out-Belichick'd Belichick.

As 8:00 PM approached, I felt a little like throwing up in my mouth.

The game was tighter than I imagined it would be. The Ravens brought their A-Game and then some. I do not know why I was expecting anything else. Oh I don't know...maybe the losses that we shouldn't have had?

But then there it was, late in the game...OH MY GOD, there was the Turnover That Changes Everything. I have come to expect this. The Steelers take the lead for the first time. My heart sinks as I realize that history always seems to repeat itself with the Ravens when they face their Nemesis.

Well, I thought to myself in resignation as the 2-minute mark approaches and we got the ball back, at least it wasn't a blowout.

Then out loud I turned to Jen and said 'See this is the thing that everyone ALWAYS talks about when it comes to The Kid. He just can't march the team down the field in two minutes for the win. That takes something...special. Brady can do it. Manning can do it. Warner. Favre. Marino. Brees. All the greats. And you KNOW Ben can do it. It takes something...extraordinary. Something you can't record or quantify. Does Flacco actually have it in him? Does he have what it takes?'

I guess he does.

Two minutes and sixteen seconds. Ninety-two yards.

I was floored. Stunned. Shocked. I think everyone in Heinz Field was too. I think Mike Tomlin was. I don't think anyone believed that they were going to do it, because they had never been able to do it before.

But they cast aside many a demon in those two minutes.

And it felt good. It felt...liberating.

It felt even better than the victory on Opening Day. Because it proved something. That first game was NOT a fluke. It was NOT an aberration. The Kid CAN do it. The team CAN do it.

And they did.

Ravens 23 - Steelers 20

OUT.

Nothing Fruitless About It

2011-11-03T17:00:00.008-04:00

Getting back on the Horse with posting over at Fruitless Pursuits. Why the major gap in my presence over there? Well, why not hop over and find out if you are so inclined.

THOUGH BE CAUTIONED. I curse like a drunken sailor on weekend leave over there...I make no apologies for it. (Um...you mean WORSE than here?)

Thou hast been warned.

OUT.

Annie Leibovitz, I Ain't

2011-11-01T17:30:00.001-04:00

Not even close. In fact, too many times I walk out of the house and am halfway to an event OR am already there when I realize I left the camera at home.

Didn't use to be like that.

I use to take TONS of pictures. All the time. I was a picture taking MACHINE. Not so much anymore. Not sure what happened. Something I need to work on, I suppose.

So not only did I totally blow it with Carter's Flag Football League (though I did manage to snap a few photos with my Cell Phone I can't figure out how to get them from the phone to the computer) but when Halloween came a'callin' I also missed most of the key photo opps there as well.

Only managed to snag a couple of shots of Bennett before he was out the door.

Hopefully some of the rest of the family got Carter in his outfit (I'm banking on it) or I am SOL this year.

Is it me, or does Bennett bear a striking resemblance to the mysterious Bat-Boy?

OUT.

Shit Happens

2011-10-31T09:30:00.006-04:00

OK, so I took two weeks off.

Lot of things happened in those two weeks. Bennett had his Quarterly Review at Step-By-Step Academy. I discovered another Ohioan raising money for iPads. Batman: Arkham City came out. Bennett had his IEP meeting. Carter played his final flag football game. Jen's parents returned from their month long trip abroad.

Lots went down.

And I'll be discussing none of it today. Because I am going to try to start taking more of a Corporal Hicks philosophy to at least a PORTION of my blogging. SHORT CONTROLLED BURSTS.

I'll still have the longies. Me loves the longies. But I gotta shorten some of them up. Hell, even this one is going too long already. Eventually I am going to try an exercise of formatting a few 'styles' as a test, just to see if it can work for me, call it pargraphical limiticus. I am going to use those templates as a guide for certain days of the week to simply lash my tongue (or in this case fingers) and eventually I will learn how to tighten up my thoughts.

I will become a leaner writer. Period.

So what WAS my point? Oh yeah. Bennett is taking dumps on the bowl.

CAN YOU BELIEVE THAT SHIT!?!?

And what is crazier still is that he is basically initiating it mostly on his own.

We started the process, by sitting him down a few times when we saw him sneak off like a cat and get that redness to the face that all you parents recognize immediately. But eventually, I guess he started to dig the feeling, because now he will, if he is 'moved', so to speak, will let us know that the barbarians are at the gate.

Bennett has not pooped in his pants in around 4 days in a row now. All weekend long he asked to go to the bathroom. Not for pee, just for poop. Though he will ask to go for farts too. He seems to favor the words ‘PuhPAY! PuhPAY!’. In Benglish this sounds an awful lot like 'Puppy' sometimes. He also wants me to read the Poop Book every day, multiple times, to him. Though during the read he often stares off into the distance as I read the words, which I do very dramatically by the way, I am a DAMN GOOD children's book reader.

But that's just what he does, and I'm down with it. Cause when it's over he knows, and he cheers.

Like an adolescent rushing FAR too quickly for third base on a first date, we tried underwear with Bennett all of Sunday morning. We took him to the bathroom at intervals for peeing. Worked for around 4-5 hours. But he eventually did tinkle in his undies. But then we came to our senses and realized we were moving too fast.

Guess we got a bit over-excited.

Hell...I thought I'd be changing his diaper at age 16 at one point, but I guess I'll be adjusting my perspective on a LOT of things around here.

NOTE TO SELF...really gotta figure out how to teach him to not stick his head and hands in the toilet AFTER he poops in it.

OUT.

You All, Everybody

2011-10-14T17:20:00.006-04:00

(This is Part VI of VI of a series of entries that chronicle my experience of Faith, from my early understanding of it as a kid and my acceptance of it as a teenager, my rejection of it as a young adult and my struggles with it as a parent of a child with multiple disabilities, and what I have come to know and appreciate about it through the acts of others.)

Part I of VI: Richard
Part II of VI: Mark
Part III of VI: Meighan
Part IV of VI: Jennifer
Part V of VI: Bennett
Part VI of VI: You All, Everybody

It's no secret how much I, within these pages, lament the fact that LOST is no longer on the air.

It was, in my humble opinion, the 1st and 2nd greatest show on television. Huzzat? Well, I waffle a lot. The Shield sometimes kicks it out of first place, depending on my mood, and then LOST has to sit in the corner, pouting like a scolded adolescent, for a time, in second place, until I get my Mackey out of my system and then LOST comes back to take first chair again.

LOST had a ton of mysterious elements. A ton. From the Pilot episode all the way to The End.

Many of those mysteries were explained, and many of them were explained...enough. You never want answers HANDED to you, right? I mean, you want to have to think for yourself, to draw your own conclusions, and sometimes to keep thinking about things, long after they happen.

Of course, the ONE mystery that has never been or will never be explained, is how that piece of shit song by Charlie Pace's band 'Drive Shaft', You All, Everybody, became a #1 Single all over the bloody globe. In the LOST universe, as far as musical tastes were concerned, I guess people were daft...Brutha!

But at least the song can serve my purposes, because for the longest time, I struggled to figure out what the name of this final entry was going to be. Can you believe that?

I went back and forth a TON. And it changed a few times. IN fact, the entire post changed several times, and was reworked several times. Portions of it got taken out and set aside, to be used in other places, for another time. Other sections got expanded on and used elsewhere.

See, because when my desire to write about this subject started, IN AUGUST, it started here, with this post. The problem was it grew to a length even SingleDad would be envious of, for a change. A length that, even for a blog that Yours Truly was writing, was just too damn long.

SO I decided to stretch it over multiple posts. When I did THAT, those sections grew. When I started expanding there, other thoughts came to me, and the whole thing...well, let's just say that my Mom's desire for me to write a book nearly came to fruition.

Ultimately, I decided that there was no way I could pick one 'name' to close out this mini-series. Because although there is one very special person at the heart of one very critical element of this last section, there isn't only one person, in this Final Act, who I can link to as the main source of overall guidance on my journey. The truth is...there are so many people impacting my life right now.

Somehow...I guess some change happens whether you want it to or not. I've become a lot less closed off than I used to be.

Dammit.

Through my experiences online before, at Palisades and at my own little BS company, and now, in the world of our community with Special Needs, I am surrounded by people who provide me with such an amazing support structure. Digital, yes. But real nonetheless.

And it really is you all, everybody, that have each contributed in some way to my current likeness of being, my preset state of mind, my ability to be more receptive, more open to new ideas, new philosophies, new ways of thinking.

And the lifelines you have given me? Their worth is incalculable.

The best part of these relationships is that they do not always REMAIN digital. And that is something you don't realize about these alliances that you form on the Internet.

Just like meeting my spouse through a keyboard, some of the most astounding representations of human beings have revealed themselves to me in the physical world by first being introduced to me in the world of 1's and 0's.

I dunno, maybe a computer really IS what saves this planet, in the long run. But not by entering 4, 8, 15, 16, 23, 42 and then pressing 'EXECUTE'. Maybe it does so just by continuing to make the world smaller and smaller.

Perhaps I am an idiot to believe in that. But then again, as you've seen, I ain't always the sharpest tool in the shed.

The way I have been living my life for the past couple of years, up until this whole thing happened with this iPad contest, has been so...utterly foolish. But after what happened, I could no longer ignore the fact that I was trapped in a loop of my own design, maybe I had been caught in it for 20 years, maybe longer, stepping out of it on occasion to have some successes in life, I don't know for sure.

I certainly stepped out of it for a while, this much I know, after I met Jennifer and during that period of time where I had many years of things going swimmingly. I had a good career that was taking off where I worked on amazing product and made good money, I fell in love, I got married, bought a home, a car, and I had a son named Carter (despite my initial terror about Fatherhood in the end I managed to make the adjustments I needed to).

Generally I was well-adjusted and although I had to manage some of my lingering anxieties leftover from childhood I did so through therapy and medication. But I attacked them gladly and did not feel ashamed to do so. My career was fantastic, and even when I left Palisades Toys, the place I LOVED working the most in my entire life, I was not daunted because I moved my family back to Ohio for the sake of being closer to Jenifer's family and cutting the distance to my Mom, who lived in St. Louis at the time, by HALF.

I even did something I never dreamed I would have the stones to do. I started my own business. And I did it with a great deal of enthusiasm and excitement.

Even when Bennett was born prematurely in 2007, I managed to do...OK with it. It was hard, and I have some regrets about how UN-supportive I was to Jennifer in those couple of weeks because of how much I retreated within myself, but I bounced back. WE bounced back. Because after all the worry and the chaos and the scared shitlessness while he was in the PICU, he seemed to be OK when the dust settled. And when he got out and came home, he started developing just like any other boy would.

And even though my business ultimately failed, I didn't come apart like you might think. I took it in stride. Taking the advice of my friend Chris I kept reminding myself 'There are not many people out there who can say to themselves that they actually produced their own product and sold it. YOU did.' That helped a great deal.

And there was something to look forward to on the horizon in 2008, because my old boss at Palisades Toys had something in the hopper with the NFL that he wanted me to be involved with, and so I was in a holding pattern waiting for that job to kick in, and so I managed to make ends meet in the meantime with eBay, because it was a job designing NFL Statuary that was RIGHT in my wheelhouse. And I wanted to do it in a big bad way.

When you look at the scope of my life overall, it was, truly, a Golden Age for me. There is no denying it was the single greatest chunk of 'problem-free' time in my entire existence.

It was only after Bennett's initial diagnosis of Infantile Spasms, and the reality of what followed, that I found myself to be completely engulfed by this new feeling. No...scratch that. That is not correct. Because I have gone back and looked. And read. I always had hope, some hope, before the surgery.

I looked at the surgery like I looked at taking my Toyota GasHogger to the shop. I truly believed that when I took Bennett to see the fine folks at the Cleveland Clinic, after all the fucked-up bullshit we went through prior to that with his initial mis-diagnosis at the local Hellspital and a summer of unforgiving daily seizures, that once that fucking tumor was excised, everything would be OK.

You take the truck in. Hood gets opened. Mechanic leans in. Buttcrack revealed. Ewww. Engine gets fixed. Car comes out. Drive home. Wash eyes.

And they lived happily ever after.

Didn't work that way.

And when I realized that? THAT is when I found myself on this path. This path I once equated to the film The Road. Very bleak. Very stark. Very little hope.

So consumed by negativity was I that I was only existing. I've talked about this state of being before, a sort of 'Walking Dead' way of meandering through life. But I wasn't doing anything to change it. Not REALLY.

I was talking to a friend of mine, actually the same man who was that former 'boss' at Palisades, trying to explain this experience, and he keyed me in to the best quote to explain what it is that I was trying to say. Brought to you from the man who also brought you universal Armageddon.

'Insanity is doing the same thing, over and over again, but expecting different results.'

— Albert Einstein

No wonder the guy was such a mufuggin' genius.

That defined my existence, for such a long, long time.

And it defines my responses to so many of the things I described above, so many of the negative things that would come to me in my life after Bennett's reaction to the DTaP Vaccination on February 12th, 2009. Oh sure, you can go back and read about them yourself...I TALKED a big enough TALK...but I never did jack shit about ANYTHING. Well, that's not entirely true...there were rumblings of change...making some strides with the Reflux lifestyle stuff, and some other things like quitting smoking, but these were baby steps, not the global revisions I required.

I simply ghosted my way through each day, giving myself just enough strength to make it through until my face hit the pillow.

And nothing more.

That is not living. It's waiting to die.

And where was God during all of this? You ever wonder why I never bothered to ask myself that question? I often did. It isn't like I didn't think about it. It isn't like I didn't talk about it. It isn't like I didn't BLOG about it.

Faith, and my lack of it, is something that I would often discuss. I found it to be something I was very envious of, as so many Mom's and Dad's in this community had it, in spades, and it provided them with such a foundation of strength to get them through the darkness.

The only God I prayed to was my X-Box. The only Halo in my life involved Master Chief.

Even if I were to pray, officially, I'm not sure who it would be to. Like I said WAY back in Part I of this thing, my belief system was VERY wacky. I don't think God is separate from Us anymore. I don't think Demons or Devils or Angels or any of that kind of thing is. See, I think all of that stuff WAS God, or a part of whatever He/She/It was.

We're talking about a being that is so high concept that even in the Modern Age there aren't really words that can adequately describe Him, so you gotta forgive me as I muddle through this. I ain't no mufuggin' Theologian.

But to WAY over-simplify what I believe, here goes. God existed as a separate Entity from Man at some point. Sees just how messed up Man really becomes (free will...D'OH!!!), and knows the only way to give Man any hope at all is to join with Man. So he does, via Sacrifice. This Sacrifice is sort of Multi-Layered. On the one hand, it results in the creation of Jesus Christ. On the other, it essentially eliminates God's separateness from Man.

Of course, Man at the time was really dumb (scientifically speaking), and scared shitless of, well, everything, and we couldn't handle how nifty all that really was, so we did what came naturally.

We killed Christ.

Man sucks.

But God is cool with it for the most part, that's how He rolls, and because of that whole experience we are now, forever, joined. Through Him, with Him, in Him? Ring any bells?

Anyway, a soul is a soul is a soul, so somewhere God's original 'soul' exists, and I think this is what we pray to, but where does it exist? Heaven? Or does it also exist within each of us? A sort of collective soul-conscious?

How should I know? Hey did I just start my own religion?

My point is that we all believe what we believe, and whatever gets you through the day is what gets you through the day. And that may sound wacky as all get out, but is it any wackier than The Force? Or a bush that talks? I don't think so, RICHARD. ;)

My problem was, that despite the wack-factor, I wasn't embracing anything other than football on Sundays. There simply had not been anything, over the last couple of years, that could convince me to open my heart to the idea of peeking out the door and seeing if anything resembling Faith within myself was still on the other side of it.

And without Faith? Hope was really just something I did not have. Not at all. And so why change anything?

Something has to happen to wake you up to the point where I guess you have no choice but to HAVE to change things. That's the only explanation I can think of, because for some reason, I reacted differently when the latest bad thing occurred earlier in the year, and that was when the Marissa's Bunny iPad Contest went belly up. I wanted to be involved in something positive for a change in the aftermath of what went down in this debacle, a giveaway in which Bennett was a 'finalist' which hopefully, if you are reading this, you know everything there is to know about.

A dear friend from way, WAY back, contacted me recently, to offer congratulations on the success of the first goal of this Mission: iPossible! thing, this charity effort. What struck me about her message was how much it summed up how much this experience has transformed me. Particularly since, sadly, she often bore the brunt of some of the worst aspects of the creature that used to lurk around inside me.

'You should feel really good...Funny to think of you as a save-the-day kinda guy, when I recall many conversations when you promoted a 'fuck 'em' attitude. But of course that was eons ago and none of us are the same now. I'm proud of you...'

When I sit back and think about it, and I mean really think about it, it is so difficult to wrap my head around the fact that, 'officially', we've only been doing any real fund-raising since sometime around July 12th when that blog went live.

Unofficially there was activity in its various forms prior to that of course, with what was going on as far as the behind-the-scenes action with people to expose the contest and prove that the iPads were not to be forthcoming, and that was all well underway before I became involved.

My main 'place' in all of this as I entered the picture seemed to be, at least from my perspective, more tied in to my relationship to the community with which I shared a preexisting relationship.

And what a community it is.

You all. Everybody.

In 76 days, this community of bloggers, and their friends and their families, pooled their resources, worked together, and raised ELEVEN-THOUSAND DOLLARS. Think about that for a second. Eleven grand. That's a car. That's a boat. That's...that's...ELEVEN THOUSAND cheeseburgers!!!!

I've brushed over the subject about how daunting the task was of getting that project coordinated and launched, for everyone who was originally involved, and some of the expense that it incurred to our everyday lives.

And I don't mean expense as in dollars and cents.

I don't dwell much on these matters because I don't feel that it is necessary or appropriate to go into all the minutiae of some of the day-to-day grind of setting up what is, in many ways, a small business.

Though I will admit the phrases of full disclosure and full transparency often play themselves back in my head as if a record is skipping.

Realistically? Those kinds of things are not entirely possible.

Especially when your end goal is not just the fulfillment of 20 iPads, but a restoration of trust and security to a community who has had its foundations shaken and then to move beyond that into setting up a legitimate charitable foundation that lasts. Those disclosure ideals are almost possible.

You can get, oh, let's say 92-94% disclosure and 89-91% transparency. Not 100%. But hey, that's still pretty good in today's world, don't you think?

Many of the things I did not disclose were those things of a personal nature. Particularly because there were many times I felt very conflicted about it. Do I blog about my LIFE over there or over here? Do I set limits? What kind of limits?

I still haven't worked it all out. I need to, certainly. Or maybe not. I might be over-thinking it.

I will say that along the way, during the time it took to do my part of the co-founding of that group, I began to take note of certain things happening around me.

Certain...coincidences.

At first, they were small in intensity and frequency, but as time went on they grew on both counts, and I began to start to ask myself questions I had not asked myself in a long time.

But I remain very practical and somewhat cynical, and I had not, as yet, felt anything resembling a spiritual 'touch' since Bennett's surgery, and then it was merely an echo, and while I was moved quite a lot during the experience of all that I was seeing and feeling with Mission: iPossible I was not ready to make any kind of formal announcement of a spiritual nature or any other, either to myself or to anyone else.

But there certainly were signs.

Signs that I could not deny. BUT...I always had the ability, just as I did throughout the last twenty years, to explain them away very easily. Or shrug them off. Or simply refuse to acknowledge them.

Anger is a powerful weapon. So is hate. When you take them away from yourself, and stop using them against...well, yourself, you do find that you can go a lot farther than you ever thought you could.

I would speak about these things often with my new adopted sister Heather, who is a Catholic. And she would listen. Heather was one of the people who spearheaded putting all of this together. She was one of its focal points. Like I said...I may be driving the boat a lot of the time, but I did not put it in the water.

She found my lack of Faith...disturbing.

Not in a Darth Vader, judgmental, Force-Choke-You-The-Fuck-Out kind of way. More of a Damn...I see the kind of pain you're in, and this would really help you heal kind of way. It is her nature. But she believed, deep down, that I did have Faith, I just hadn't found my way back to it yet.

But she believed it was only a matter of time.

Remember when I said that there were parts of all of this that got chopped up and moved around? Well, this is one of them. There's a lot more to say about Heather, Zoey's Mom, but I'm saving it for...something else. You're just going to have to trust me.

Anyway...where was I? Oh yeah...ignorant bliss.

On Monday, August 1, I was supposed to take Bennett to Cleveland Clinic for his Psychological Evaluation. This was his 2 year follow-up to his surgery. My super gigantic tonsil stones were kicking my ass, so Jen took him instead. She called me from the road, driving back, around 2 in the afternoon, and gave me the news.

The Jim-Kirk-Flying-Leap-Kick-In-The-Chest-News.

'Maybe it wasn't such a good idea for you to have taken him up here after all,' she had told me. 'It was brutal. You need to be ready for the results. It isn't very good at all.'

Not that this isn't something that you don't already know as a parent. You KNOW that your multiply disabled son is seriously delayed. You know that he is seriously screwed. But it is during these times when you are given evaluations, and even more so when you are given pieces of paper that have words clinically stating just how bad shit is really hitting the fan that it gets to you.

Still don't really know why this is. Haven't figured out the why yet. If I do I will let you know.

Bennett tests out at an IQ of less then 48. He is nearing 4, and yet is really only developmentally measured at somewhere between 14-18 months. He was a mess...cognitively speaking. I won't go into the details about some of the specifics of the test elements, but to tell you of some of the things he cannot do? They are beyond unreal.

Another piece of soul-shattering news. But I should be OK with it now, though, right? I mean, after all...this is The New and Improved Ken of 2011, yeah?

The New and Improved Ken of 2011, after hanging up the phone with my wife, was on the living room floor, sobbing, totally overwhelmed with guilt and emotion. I found myself wondering...I was so consumed by this Mission, this contest fulfillment, it never once occurred to me, EVER, to try to consider Bennett's needs first.

Was this thing somehow linked back to being my fault?

Did I screw him over in my short-sightedness? Did my lack of awareness make him score worse on the test because I did not think of my own family before becoming consumed by this other thing? Could he have done better if I had tried harder to get him an iPad months ago?

You know, they say on the plane, when it is going down, that you put that margarine cup over YOUR mouth securely and THEN you put the margarine cup over the mouth of the person in need next to you.

I didn't do that.

Now granted, I was pretty tired...and in hindsight that kind of thinking is just plain silly, but emotions can do that to you. But I had not been sleeping. I was a wreck.

And then, for some reason, I know not why because I have not done this in far WORSE situations, for the first time in twenty years I got on my knees, dropped my head, shut my eyes, and prayed.

I said I was sorry, and asked God to forgive me for turning my back on the Church and for walking away at Meighan's funeral. No matter what I had done throughout my life, no matter what fate lay ahead for me, my son deserved better than this. Don't let him be punished for what I've done. I asked for strength, for guidance, and although I would never ask for any physical object outright, I did ask for something specifically...'When this is all over, when these 20 iPads get shipped, please help me find a way to figure out how to get an iPad for Bennett. I don't expect it for free, I'll do whatever I need to do to get it. Just help me figure out how. Please'.

To show my commitment, I went to my Facebook page. It was, I don't know, 2 or 3 in the afternoon. I changed my Religion field from a rather snarky 'Recovering Catholic' to 'Catholic', and said 'OK...I'm back. Let's see how this goes. I'll do the best I can.'

Yeah I know...I was talking out loud. Felt weird then, too. Feels weirder telling people about it. It's so...personal. Even for me.

And then, truthfully, I just went back to work. No clouds parted. No lightning. No choirs singing. The President didn't call.

Pretty uneventful afternoon really.

That night, after dinner, sometime around 7 or 8 o'clock, I can't remember exactly when, I heard a knock at the front door. At first I thought it was my older son, Carter, because he often tries to prank me into going to the door by knocking at the wall.

But I glanced outside, and there was somebody there.

I opened the door. There was a woman standing there. She looked at me, with a smile and a somewhat inquisitive look on her face.

'Ken? Hi. This may seem a little strange, I'm...'

I had already recognized her, and cut her off in mid-sentence. '...Joyce?'

She confirmed it. Indeed it was Joyce, the mother of the Sarah from My Name is Sarah, a fellow blogger and Special Needs parent. She lives in Cleveland, 2+ hours north of Columbus. We have always meant to meet in person, but circumstances never materialized. When I was in Cleveland Clinic for the surgery, I know she had wanted to come up, but at the time she did not want to intrude. Things were just too raw for me.

Joyce was in Columbus for a meeting for her business, and she decided that this was as good a time as any to finally do what we always meant to.

I invited her in, of course reminding her to watch her step, as the last thing I wanted was to have her fall through the floor. (We have, since, managed to rig a temporary repair until we can get the cash together to do the more significantly expensive full replacement of the entire entryway.)

When she came in, she revealed a package that was in her hands.

It was an iPad.

And it was for my son.

Joyce explained that she wanted to thank me for everything that was happening with the Mission: iPossible group. She thought it was a real shame that Heather and I had taken ourselves off of the Recipient List, but she understood the reasons. But she didn't want to think of Zoey or Bennett having to miss out on a chance to have a learning tool as unique and game-changing as the iPad. And since the company she and her husband have built was doing well despite the economy being so bad, some of the money they had already earmarked for 2011 for charity purposes they wanted to donate to this cause.

And she wanted to, because she was so close, deliver this particular one in person.

I was...almost speechless.

'I can't accept this.'

And although Joyce informed me that she already knew that I was going to say that, I don't believe she had any idea WHY I was saying it. Because while there was one part of me that did not feel that I could actually take the iPad before the rest of the Twenty on the list had received theirs, the part of me that spoke the words was the part that did not want to accept what was happening, because to do so meant that I had to do something I was not sure I was ready for.

I couldn't explain any of this G-Man stuff at the time to Joyce, because I was fairly dumbstruck after all. Though I did say that I would need to put it into the hopper for people on the List, and she said I couldn't. And that I needed to understand the reasons why. That those iPads would happen, and soon. I just had to believe they would.

But I had to make sure I didn't forget about Bennett.

Eerie.

It's not just a lake up there by Cleveland. Though that's spelled Erie, anyway.

So I accepted the iPad on Bennett's behalf. Joyce told me she planned to send one to Zoey, and I had to tell Joyce something that I had known for a few days already, that one of Heather's friends had just given an iPad to Zoey, and Heather had a similar experience to my own. At first a reluctance to accept, followed by guilt, then an acceptance of the device, but also a request that she not forward the iPad to the Mission. Heather and I had, even then, decided to keep that quiet until after the 20 had been shipped. It did not feel right to talk about it. It felt...weird.

So Joyce skipped that one, and went on to buy another down the road, which was Jaxson's, and then she donated even more to the Mission later on. She and her family were amazingly generous. It was overwhelming.

That night, as we sat and talked, she tried to take some photos of us and of Bennett, but one of the things that she learned first hand about Bennett is that he has a very odd aversion to red light. So with red light cameras, he tends to flip out a little. I bought a green light focal camera for that very reason, because when the green light shines on him he does just fine.

But there was no way Joyce could know that, and it is one of those things you just don't think about...until it happens. So Bennett at first was very engaging with her, until the camera thing, and then it got a little dicey for about 15 minutes.

But he calmed down. And you know what? It was a great visit. iPad aside, it was nice to finally meet Joyce after all this time.

Of course, I couldn't tell her about what I had experienced earlier that day, I was just too shell-shocked, and I wasn't quite sure how she would react to it. I didn't even know how to react to it.

Eventually, we said goodnight and she got in her car and started the trek back up to Cleveland.

When the door closed, I went back into the living room and sank into the sofa. I was wiped out. What a draining day I'd had. Felt like a week. Between bouts of tears, I told Jennifer what had happened earlier in the day. She couldn't believe it. I couldn't either.

But there it was.

What happened that day? That's a very heavy duty question, isn't it?

And whenever I have questions of a deep, spiritual nature, the first stop on my quest for answers is a very special place. It is the holiest of holy's, so to speak. And for quite a while now, whenever your soul is in need of enrichment, there is only one source that you can turn to for the TRUTH that you so desperately seek.

Pulp Fiction.

Jules: Man, I just been sitting here thinking.

Vincent: About what?

Jules: About the miracle we just witnessed.

Vincent: The miracle you witnessed. I witnessed a freak occurrence.

Jules: What is a miracle, Vincent?

Vincent: An act of God.

Jules: And what's an act of God?

Vincent: When God makes the impossible possible. But this morning I don't think it qualifies.

Jules: Hey, Vincent, don't you see? That shit don't matter. You're judging this shit the wrong way. I mean, it could be that God stopped the bullets, or He changed Coke to Pepsi, He found my fucking car keys. You don't judge shit like this based on merit. Now, whether or not what we experienced was an "according to Hoyle" miracle is insignificant. What is significant is that I felt the touch of God. God got involved.

Vincent: But why?

Jules: Well, that's what's fucking with me. I don't know why, but I can't go back to sleep.

Vincent: You serious? You're really thinking about quitting?

Jules: The life?

Vincent: Yeah.

Jules: Most definitely.

Vincent: Oh, fuck. What'cha gonna do, man?

Jules: Well, that's what I've been sitting here contemplating. First, I'm going to deliver this case to Marcellus, then, basically, I'm just going to walk the Earth.

Vincent: What'cha mean, "walk the earth"?

Jules: You know, like Caine in Kung Fu: walk from place to place, meet people, get into adventures.

Vincent: And how long do you intend to walk the earth?

Jules: Until God puts me where he wants me to be.

Vincent: And what if he don't do that?

Jules: If it takes forever, then I'll walk forever.

Vincent: So you decided to be a bum?

Jules: I'll just be Jules, Vincent; no more, no less.

Vincent: Let me ask you something, when did you make this decision? When you were sitting there eating that muffin?

Jules: Yeah, I was sitting here, eating my muffin and drinking my coffee, when I had what alcoholics refer to as a moment of clarity.

Do I believe that this experience with the iPad was a bonafide 'according to Hoyle' miracle? A prayer answered?

No.

First of all, the timing is already way off. The entire act of Joyce getting the iPad for Bennett was already in motion before I ever uttered a single word of prayer, before I changed my Facebook page, before I made any kind of commitment and decided to open any kind of door back to Faith.

Remember when Neo is talking to the Oracle in The Matrix: Reloaded and she tells him that he has already made his choice of whether or not he will save Trinity's life? Neo is confused by this. (Hey, it's Keanu Reeves, confusion is his single best acted emotion...NO WAY!!!)

So Neo asks her 'But if you already know, how can I make a choice?'

And the Oracle responds by saying, 'Because you didn't come here to make the choice, you've already made it. You're here to try to understand WHY you made it. I thought you'd have figured that out by now.'

Funny thing, Time, and you could argue that when it comes to Oracles, or The One, or God...that Time is like that. That what I am talking about right there is just Super-Crap. I would not tell you that you are full of it, either. There's room for all KINDS of theories in these here parts.

BUT (there's always one of those)...like I've said so many times before, I do not believe that direct intervention of any kind is how it works. Time manipulation not withstanding.

And the truth of it is? I can't afford to.

Here's why.

If I do, if I choose to believe that God exists as a totally and completely separate entity from Man and that He actually makes conscious choices about what happens here on Earth with all of us, then this WHOLE thing doesn't work for me. This whole thing can NEVER work for me.

Because to believe that is to believe that God had a chance to keep a tumor out of my son's head and didn't, and I can't accept that. Or He put it there, and I can't accept that. Or He decided to stand by and let me get the shit kicked out of me for years and He did nothing to stop it. I can't accept that, either.

So for me to have Faith, for me to have a relationship with God again, for me to have any kind of spiritual life of any kind, this is the way I have to manage it, despite some of its obvious contradictions which I'd be happy to address some other time. But if I try to go some other way with this, and I am back where I started. Placing blame, being pissed off all the time and walking away from a coffin that holds the cold body of someone I love.

Can you understand that?

Besides, when all is said and done, everyone has a different perspective, a different viewpoint, of what they believe and how they choose to believe it. And that's not only OK, it is GOOD. It is what I love about the Human condition. Makes things interesting.

As long as we aren't blowing each other up because we don't agree on how each others God does His or Her thing, then the ONLY things that matter are that you live your life the best that you can and you don't treat other people like garbage. Imagine how great things would be if everyone followed those two simple rules in life?

This Mission, Joyce showing up at my door with an iPad, and everything surrounding it...all the other acts of generosity and courage and sacrifice I have been the beneficiary of and that I have witnessed...all staggering. I can say that in many ways they are not unlike Richard being there for me when Bennett had his surgery, or Mark offering me salvation from self-destruction when he opened the door to his basement, or when anyone else in my life through acts of kindness and giving and spirituality have helped nourish my soul along the way to...wherever it is that I am now.

And that is what is of paramount importance to me. Right here. Right now.

Because at least where issues of the spirit are concerned, I am walking the path again. I am asking myself questions again. Revisiting some old ones, and finding new ones to seek answers to. And to think it all started because of an act of malevolence. That is what really makes me...well, it actually makes me smile, to be honest with you.

There's something...just perfect...about that.

So then what was it, this 'iPad Incident'? I don't know. I have attempted, ever since, to try to figure out what to call it, and I have no real name, no real explanation, no real words for it.

And I have decided that maybe, just maybe, it doesn't really need a label.

Struggle as I have for some kind of an explanation or rationalization for what happened, or any of the events that continued beyond it, and there have been many still, I think that, ultimately, it is the end result that is worthy of celebrating, explanation or no.

Because the end result is that after 20 years, my Faith has finally been restored. THAT is the treasure I take with me from you all.

Everybody.

AMEN.

Bennett

2011-10-12T17:00:00.009-04:00

(This is Part V of VI of a series of entries that chronicle my experience of Faith, from my early understanding of it as a kid and my acceptance of it as a teenager, my rejection of it as a young adult and my struggles with it as a parent of a child with multiple disabilities, and what I have come to know and appreciate about it through the acts of others.)

Part I of VI: Richard
Part II of VI: Mark
Part III of VI: Meighan
Part IV of VI: Jennifer
Part V of VI: Bennett
Part VI of VI: You All, Everybody

On the darkest days, the sun always shines behind the clouds.

I don't know who actually said that 'for real', but whoever did needs some kind of a statue, somewhere. Because with as much darkness as I have known in my life, and as much as I talk about how bad things can get, I can also say this with absolute, unwavering certainty.

Ever since the very first day that Bennett started having seizures, there were little things that were happening around me to remind me that I was never alone.

But as is my nature, and as consumed as I often am by anger, by guilt, by rage, by all things negative...it is so easy...so very, VERY easy to fail to see those things. It is also easy to simply refuse to, when you are constantly bombarded with Life.

It's like when you train to do something in a controlled environment, like maybe Karate or something. Everything is groovy. You're learning form, technique, movement, how to punch, how to kick, how to defend, etc. And you feel terrific as you do all this training and you look great doing it.

But everything changes when you are actually fighting another human being.

Because they throw all kinds of variables at you, just like Life does, and suddenly you don't look as graceful anymore do you? And 99 times out of 100 that first match finds you flat on your ass.

That's why martial arts also teaches things like mental preparation and focus.

Centering oneself.

Balance.

Things that allow you to remove all of the distractions that might make it more difficult to zero in on that which you need to be thinking about. Things that make it more difficult to 'see the remote'.

Yeah...George Lucas really wasn't an asshole, after all, was he? Despite what you may think about Jar-Jar Binks, The Force is a nice blend of East meets West spirituality, and we ALL can learn a thing or two from Yoda.

Spiritual Adviser? Jedi Master? What's the difference?

Yes, it is easy to get distracted, and miss the signs. But thankfully, like I have been saying over and over, the right people in your life become signposts...again and again and again.

I'm walking down the streets of Cleveland, on my way back from one of the stores near the Cleveland Clinic.

It is Tuesday afternoon.

August 25, 2009.

In two days, Bennett will have a serious surgery that will remove a tumor in his brain that, we hope, will stop his catastrophic epilepsy (so inadequately named Infantile Spasms) and won't cause him to lose any of the skills he has actually managed to gain.

And oh yeah...obviously we hope that the surgery won't kill him.

The outpouring of support from my friends, both online and off?

Staggers me.

E-mails, messages and phone calls are mind-boggling. I am a pack-rat, I save everything. This is why I have two multiple Terabyte towers of storage for my computer crap, as it is often fun to go back and read this kind of stuff.

Sadly, the one friend who is absent with any messages at all during surgery week is Mike W. I don't hear from him. I figure he must be busy with his daughter. I heard from him days before, and I hear from him after regarding some Questcor stuff and Infantile Spasms Awareness Week and a television appearance that never materializes that Danielle is copied on, but not a single thing about Bennett's surgery while he is having it.

It stings. More than I thought it would. Especially since he was one of the first few people to reach out a hand to me when I was drowning in sorrow those first few weeks, looking to anyone for answers about what might save my son.

As I round the corner about to hit the doors of the Inter-Continental Hotel, my cell phone rings. I do not recognize the number. But that is common this week.

I answer.

It is Richard, my old friend. We have not spoken in a long, long time.

He tells me that he is boarding a plane tomorrow and that he will be arriving in Cleveland. He wants me to know that he will be there for Bennett's surgery. I have not seen Richard for probably 20 years, give or take. We've spoken a few times since then mind you, but I haven't been in his presence in at least two decades. I thank him, tell him I am looking forward to it and we say goodnight.

I figure, for him to take this trip he must have a damn good reason, but I was not really looking forward to the extra worry of him being there. My Hulk was in rare form. I was angry. My son was seizing like a Mufugga all day and all night, and I was not sure that I could also look out for someone else's needs.

You might think that thought process harsh, and you would be right. It never occurred to me that anybody could be so...completely and utterly selfless. But Richard is a good man, and I have never considered myself to be one, and it was hard for me to wrap my head around his actions and motivations.

I always considered Richard to be a good friend, don't get me wrong, but to fly to Cleveland when he is not made of money to be here for my son's surgery, when we haven't actually seen each other in 20 years?

THAT'S above and beyond the call.

As the cool rush of conditioned hotel air blasts me in the face and I near the elevators I figure this must have something to do with his Mom. Though I do not know the particulars I am vaguely aware, and only vaguely (this is what a shitty friend I have been to him and why I am even MORE puzzled as to why he wants to be here) but I am aware that his Mother died of a brain tumor, but as far as the details of it? I didn't know them. Not as much as I should have.

But I figured it must have something to do with this, and that his intimate connection to this condition is what is driving Richard to get on a plane and be here with me at what could very well be one of the darkest hours of my entire life.

The next day Richard arrives and after a few moments of awkwardness it was as if the years melted away, as if no time has passed at all. In fact, his presence there makes the experience so much easier for me. He is at my side the entire time, anchoring me any way that he can. He is, in essence, everything you would expect a good friend to be and even more. He was taking care of every conceivable detail, and then some.

When you are waiting for your kid to be wheeled off to have his head cut into, there is a feeling that comes over you that I can't easily put into words. Maybe the best phrase I can use to describe it is 'absolute dread'. Your mind goes to dark places, it wonders if you will ever see his face again.

I wondered much more than that, sitting there, my chest heavy, my head hurting, my heart so burdened with pain, a pain that I had never known before, and I knew pain. What if he doesn't know who I am anymore? What if the part of the brain they cut out is the part that has 'Daddy' in it?

When you are in that small room, you almost have an instinct to run. To just GET OUT. I would be lying if I didn't admit that I looked at the door a couple of times and did not have the thought flash through my mind. You start to feel a rush of anxiety, or at least I did, and I. Just. Wanted. Air.

Or you just want to start screaming, as you are making a small video and you see that Bennett is having a cluster of seizures, again. You can only hope that this is, maybe, the last time. The last cluster. I stopped making the video and hung my head, I didn't really have any tears left in me that particular week.

I felt the firmness of a steady hand on my shoulder.

Richard's hand.

He must have seen my body language change.

When Bennett was about to be taken away, Richard wanted to say a prayer. He'd been doing that a lot since he arrived. It was welcomed. It is, after all, one of his defining characteristics. Always has been.

For every previous prayer, I did what I always did during prayer since I walked out of the Church. I politely bowed my head, looked around at my shoes, noticed how dirty they were, took a look at the floor tile and other mundane things.

During this one, at this particular moment, I allowed my shields to drop for a moment. I closed my eyes. And while I did not actually join in, I did not force it away either. I did not push against it with all of my hate. And for the briefest of fleeting moments, almost like the soft flutter of hair across my face, I felt an echo of that 'touch' in the room, a sense that, somehow, Bennett was going to be OK.

I can't explain it. There is no rational reason for it. There never is.

I just somehow knew it.

I left and went out to the waiting area feeling...less afraid.

Later in the morning I finally asked Richard, point blank, why he came. I thanked him, of course, for being there, it was a huge relief, even though at first I was very nervous and worried and worked up about it, a fact that I did confess to him. I never did keep secrets from my bud. And I asked him if it was because of his Mom.

And he was honest, as he always is.

He said that a lot of the motivation about his being here was related to his Mom, he had to admit to that, and certainly because he has always valued our friendship, despite the distance, despite the length of time that has passed between actual visits or phone calls. But each of those things were secondary to the primary reason he felt it of utmost importance for him to be here.

He wanted to be here to pray for Bennett, because he knew, because of the way my relationship had turned out with God, that I would not be able to.

I was, frankly, stunned.

Not in a bad way. Just not the answer I expected.

I considered it to be a very noble, very selfless, very...Christian thing to do. And extremely non-judgmental, exactly the way Richard had always been with me. Even when we disagree about things of a spiritual nature (and we do, even to this day, often respectfully disagree), he never judges. A point which was brought up even that morning, by me, when one of the Techs came in and drew a mark on Bennett's left side of his head with a black Sharpie.

'Why did he do that?' Richard asked.

'I'm guessing so that when he is in there the surgeons know what side of the head they are supposed to cut open,' I replied. 'Old School, don'tcha know.'

I looked at the mark, a giant 'X', marking the spot, though it was slightly skewed, and it could almost be a 't' or a '+'.

'You know, I'll bet when you look at that, you see a cross, don't you?' I asked him.

'Yeah...why?

'I see an 'X', that's all.'

'That figures.' He smiled.

And that was that. He knew.

I was struggling. That was why he was there.

And even after the surgery, stuff just kept right on going on just as it always had been, like a roller coaster ride from Hell.

And if you've been a reader of this blog for any length of that time, you know the ups and downs we faced between then and now. I got a great job and then got laid off again, the financial ups and downs we've faced, my mother's illness, the issues that come along with Bennett's multiple disabilities and all of the fallout with his behavioral difficulties, self-injuries, his learning problems, etc.

Carter's scare with his kidneys, the Ohio government cutting disability benefits, the death of Eddie, of John, our miscarriage, my Mom's house getting robbed, the screwdriver through my hand, Jennifer and I nearly getting a divorce, the GI issue that sent me to the ER, the anxiety and depression, the house beginning to fall apart around us, the tonsil stones, the Ulnar Neuropathy on and on and on...

Oh and let's not forget...the TV show LOST ended.

That REALLY sucked.

And of course, the entire reason for this small mini-novel...the Marissa's Bunny iPad Contest.

Because it is here, at this point, when I realized that I had put someone who I considered to be a trusted friend into a position that allowed him to take advantage not only of my disabled son, but of my vulnerability as a Special Needs father and blogger. I was shocked and in disbelief. In all my years I had never known such a fierce and bitter betrayal and I think it is safe to say I will probably never know its like again.

And yet, for reasons that are totally beyond my ability to explain, this time something was different about the way I responded to this latest nasty turn of events.

I did not feel anger, or hatred. If I did, they were fleeting and temporary reactions. They did not consume me. If anything, my emotional state was mostly that of sympathy, or pity. But I did not want to dwell in the negative. I couldn't. Not anymore.

This time, things had to be...different.

And just like that, something inside me simply came apart...and was remade.

It was the first and only time that I can remember having a very specific reaction to something negative in my life that was 100% different to the reactions I had to most of the negative things in my life. I made a conscious decision to respond with dignity, to live my life differently, to control my emotions more effectively, to focus on the positives. To do something good.

And then? Everything changed.

OUT.

To Be Continued...

Jennifer

2011-10-11T14:30:00.007-04:00

(This is Part IV of VI of a series of entries that chronicle my experience of Faith, from my early understanding of it as a kid and my acceptance of it as a teenager, my rejection of it as a young adult and my struggles with it as a parent of a child with multiple disabilities, and what I have come to know and appreciate about it through the acts of others.)

Part I of VI: Richard
Part II of VI: Mark
Part III of VI: Meighan
Part IV of VI: Jennifer
Part V of VI: Bennett
Part VI of VI: You All, Everybody

FINALLY coming back to this. Sorry. Got a bit...well, you get the idea.

It's weird when some of your friends read these posts and comment on events that took place when you were but a young lad, trying to make your way through life as best as you could.

I was not always as, what's the word I'm lookin' for... 'enlightened', as I am today.

Mark, my aforementioned friend, was talking on the phone with me a while back and reminding me of a few of our crazier nights and some of my crazier actions that I used to take to express much of the rage I wrote about in the last entry of this little journey. And although we laughed a lot about those days, I think about some of what I did and I see myself through a mirror very, VERY darkly.

He reminded me, among other things, of the destruction I used to wreak upon the mailboxes of complete strangers.

I'll pause for a moment while you try to figure out why in the Hell I would even bother to do something so juvenile...IN MY EARLY TWENTIES.

I would be out with Mark, his brother, and a bunch of friends, and many times on the way home from whatever function we happened to be attending one of the main attractions was watching Yours Truly do his best Godzilla impression on any of the mailboxes that happened to be between the door I exited and the automobile I happened to be getting into.

Automobile antennae, miscellaneous lawn ornamentation and shrubbery were not off the Menu, either.

It wasn't always complete destruction on the mailboxes. It was usually bending the 'tongue' forward and the flag outward, or punching the mailbox askew on a weak post. For wooden sheathed boxes that looked like miniature versions of homes, I just ripped off the roof. For the very stubborn, stronger models I would put all of my weight into them and tilt them forward into the street as best as I could. During some of the my darker nights, mailboxes were completely ripped out of the ground and hurled into the streets. It was not uncommon for me to comer home at night with scratches and cuts that needed tending.

Mark and I laugh about it now, and we did a mere few years later, when I began to calm down a little. We jokingly named it 'Mai Rage' on one of our computer baseball teams one year...enough time had passed I guess. But we also recognize how dangerously close to the edge I really was.

At the time, Mark just knew and accepted that he had to sort of have my back and allow this to be my safety valve, my pressure release. I think he surmised that if I could let it out, in controlled circumstances like that, I'd figure out how to work through this. That somehow, things would eventually be OK.

And they were OK, sort of. I got by at least.

I wonder how many people from those years who follow this blog are reading this and saying 'Hmm...I always knew that about him.', or others who might be saying 'Wow...now that explains a LOT.'. Because though rage and anger were the fuel that sustained me, for a very long time, they almost rarely ever were exposed to anyone. I kept it very well hidden. Very tightly contained. In fact, so much so that to some I may have even seemed reserved, almost quiet.

In fact, when I think of that second Incredible Hulk film, where the 'Days Without Incident' text would appear on the screen, it reminded me of the reason why that Marvel character is the one I always identified the most with.

Child abuse. Father issues. Fueled by anger. Lost. Bouncing around from place to place, person to person. Always feeling isolated and alone. Bruce in his natural state was a fairly quiet, soft spoken, fairly relaxed appearing individual. Occasionally turning into something uncontrollable. Something ugly. Something out of control. But never trying to hurt anyone intentionally. And nobody ever seeing it because you never did it around anyone who really knew you.

That's primarily the reason why I spent all of my 20's with one failed relationship after another, and started my 30's out the exact same way. Nothing would stick, because I couldn't stick. How could it?

And through all that time, I never once, not ever, not for a second, thought of looking to my Faith for an answer. I kept that tightly locked away, and I would not, for any reason, whatsoever, open that up. Not after what happened to Meighan.

I outright refused.

Some would argue that if I had chosen to do so, things might have gone better for me through those years.

Maybe. I don't believe that God would have stepped in and altered the course of my life, changed Coke to Pepsi or anything like that. But I certainly could have used the community of the Church, the people in it, and no doubt some of the words of Christ as a guiding light through all of that bitterness. All of that chaos and darkness.

But I chose not to.

I blame no one but myself, mind you. Not my childhood. Not others. It is my responsibility alone. I was a grown man, capable of making the decision to either live a life according to a certain set of guidelines and principles and ethics...or not.

Near the end of the 20th Century I was living in Savannah, Georgia, screwing up yet another relationship and going nowhere fast in my career, this after having just spent a small fortune on a Masters Degree at the Savannah College of Art and Design in order to wait tables.

I was struggling to pay rent and I was having a terrible time finding a job in my chosen career field. I had, very foolishly, picked the absolute WORST time in the world to break into the field of comic book illustration, because even though my work was probably strong enough to get me into the business and get a career going, the industry itself was imploding.

I was choking on debt, drowning in it. I was mired in an unreal depression from what was going down in my personal life. I really thought that I was going to just keep heading down this path of going nowhere, I felt so hopeless. Mailboxes were starting to look REALLY good to me again.

Finally my friend Mark reached out to me and offered me a chance to move to Ohio and live in his basement for a while. I could get away from Savannah, start fresh, get a clean outlook on things, not worry about rent or any other expenses, and try to sort out how I was going to fix my life and start putting all the pieces together.

Mark saw his friend struggling and he decided to do something about it... BUT...he knows I will waver, I will hesitate, because I did, very much, love this woman I was living with, even though things had been going badly. So what does he do? He buys a One-Way plane ticket that would have him land in Atlanta at a certain time, on a certain day. Basically saying 'If you are not at the airport with your shit en route to Ohio from Savannah to pick me up, I will be super pissed.'

What choice did I have, really, but to honor my friend? I couldn't leave him hanging in the breeze like that? But you gotta hand it to him, yeah? A very smart play on his part.

So I met him at the airport, with all of my, um, stuff, picked him up, and lived in his basement for an ENTIRE YEAR. I filed bankruptcy to get out from the debt that I could, bought the first Apple Macintosh computer (sniff) I ever owned of my very own (with money I borrowed from my Mom and took YEARS to pay back), used that time to buy to teach myself how to use it, and started hitting the pavement looking for a 'real' job, all with no expenses to tie me down while I searched.

See, this is one of those things I try to explain to people all the time as far as how the whole God thing actually works here. Here in this place. On this Earth.

Mark didn't have to do something like that.

You may be saying...'Well that's not that big of a deal, he just let you come stay at his house.' and you'd be WAY off base. It was the HUGEST of HUGE deals in the HUGIVERSE. Why? Because the selfless act of making the offer of doing that, despite the fact that it ends up putting on him and his family the burden of expense and all the other strains it places on them, it essentially puts in motion all the series of events the lead me to right here, right now.

And I don't think I can say that about any OTHER single thing in my life, specifically. At least as far as the later part of my life is concerned.

Because moving here, to this state of Ohio, is what opened the door on a career for me, finally. It is what opened the door for me to finally let go of so much of my rage and my anguish as I, after spending one year in Mark's basement, finally moved out and got my own place, got on my feet, and during the course of the next two to three years as I started working full-time and spent time focusing on that and on making new friendships and on building something great at ReSaurus as a toy designer and ultimately a Product Manager I found a fulfillment I had never known before. And it did not hurt at all to be around Mark again on a regular basis. Not one bit.

I had rounded a corner in my life at last, one of experience and maturity I think. And perhaps, after almost ten years, I was starting to heal from what had happened when Meighan died.

And the thing is that all of this, the entire experience of coming to Ohio and making this transition, both physically and emotionally, is what ultimately led me to Jennifer.

What are the ODDS...???

You had an attractive young professional woman, a nurse, who was 26, who somehow happened to dodge the marriage bullet when almost none of the rest of the women her age had. She lived here, in Columbus, Ohio, a place I had heard of and only driven past once in my life when I drove my friend Mark from Baltimore to Lima to move there for law school.

You had a man, who was 31 years old, just about to turn 32, who has dodged the same bullet because...well, have you seen any photographs of me? And have you been reading this thing? I got problems. And by all accounts, I should have ended up either staying in Savannah, or going back to Baltimore, the place I considered 'Home', or going to St. Louis, where my Mom was then residing.

What are the ODDS...???

That instead, I ended up in Columbus, Ohio because my best friend from High School just happened to go to a Law School in Lima and get a job in Columbus since he passed the Ohio BAR. And while I am in Columbus with my friend I end up LUCKILY finding a job there, just in the nick of time before I wear out my welcome, and I had to sort of lie to get it. (A whole nutha blog people!)

So I settled down there, and started my life over, essentially. And I made strides, and I got some shit together. And at some point I was ready to start dating. But I had ZERO time to really 'meet' people. So I did something that really was not chic at the time, I went the 'online dating' route.

Love@AOL.com was VERY new, and one of the few places you could actually do the online dating thing in 1999. I had been doing it since 1998, with mixed results and nothing I would consider successful but it did provide a handful of incredibly funny stories and a few interesting evenings, but Jennifer happened to give it a BRIEF shot late in the summer of 1999 just as a fluke using her roommate's account since she did not even have one of her own at the time. But get this...I had become so frustrated by my lack of real success with it? I was about ONE WEEK AWAY from closing my AOL account.

I simply had not done it because I had been too busy at work.

What are the ODDS...???

And what are the odds that she just happened to miss the line I had on there that I smoked? Because she DETESTED smoking! And had she known I did it she would never have even opened a line of communication. And what are the odds that at that particular time, that exact month that we happened to start communicating, I had actually started to quit smoking for a while using a Nicotine patch so I was only really smoking a single cigarette in a day anyway so when we DID meet the smoking thing never even came up?

Weird right? Maybe not. Maybe odds don't have anything to do with it at all.

She was, however, the first person I ever got to know by speaking a great deal to before meeting face to face.

So when we finally did meet, in the parking lot of the Meijer on Route 23 at 7:30 PM on August 27th, 1999 I had a very unusual experience, one I have never had previously.

I wasn't blown away by her.

I wasn't swept off my feet.

I didn't have that mad rush of emotion, that feeling in the pit of your stomach feeling that always sort of sends you in to the Stratosphere when you first get hooked up with a woman.

Don't misunderstand me. I thought she was attractive. I mean look at her. And I liked her. But I thought those things already. I had seen photographs and I had been speaking to her at length for weeks leading up to this date. I guess what I am trying to say is that if you were expecting me to say I saw Jennifer and I felt like the clouds parted and Angels were singing, that isn't really how I felt at all.

I had a very simple and extremely under-stated reaction on that first date.

But I had a great time. We went to Bravo, a fantastic Italian restaurant and then finished off the evening with some coffee and dessert at an outdoor coffee house that has long since closed down, sadly. We talked the entire time, laughed, it was awesome.

There was an incredibly awkward goodnight hug. I think she thought I was going to go in for a kiss, but I would never do that. It's policy for me. I don't typically go for kisses on a first date unless I'm given a green light by She Who Is To Be Kissed. I usually don't get those, though I have on occasion.

As I drove home, I pondered the whole thing. Like I said, I did have a great time, and I did like her, but I thought something was...missing. I just wasn't sure what it was. Couldn't put my finger on it.

Could it be that I just wasn't all that into her after all? Could it be that I didn't REALLY find her attractive now that I met her face to face? I mean, someone can BE attractive and you can just not be attracted TO them. It's possible, right?

Nah...really? Are you serious, Lilly? Are you high? She's HOT.

This was wracking my pea-brain, and I could not for the life of me come up with an answer. No way, no how. I had every intention of seeing her again, and she had said as much as well when we parted ways, I just hoped that by the time I saw her the next time I might be able to figure out just what in the Hell was wrong with me.

We went out again, a few days later, and between the first and second dates we spoke on the phone as we always did. Long conversations. Deep conversations. About all kinds of topics. It was sort of defining for us. And totally new for her. She wasn't used to someone who would talk about...well, about everything. I do. She found it kind of liberating, and I think refreshing, to meet someone who wanted to talk about things that were off the beaten path, but who also wanted to hear what SHE thought about those things.

On the second date, I became officially freaked out.

Again, I was having this strange, un-definable reaction inside my head that I could not figure out. What the HELL!?! Outwardly nobody would be able to notice a thing, and she certainly did not, but inside it was like a room full of Congressman arguing about the National Debt. Why in the Hell was I having such a...pedestrian response to this woman? What does it MEAN?

At the end of the date, she invited me in to show me her apartment. I understood what that meant. A goodnight kiss was forthcoming. I wasn't even sure I WANTED to by this point I was so freaking confused by what was going on inside me. Here was this attractive, down to Earth, charming, intelligent, professional woman with a strong family background and no real drama in her life and my response is almost to turn and run.

When she turned to 'present the opportunity' (You know what I mean, ladies!), I kissed her.

You know in movies like, say, The Matrix, when they have that thing called 'Bullet Time', when everything slows down to a crawl until time seemingly stands still? When objects stop in mid-flight, like bullets or even rain-drops, suspended, and you can reach out and pluck them from the air, effortlessly?

Kissing Jennifer for the first time was like that.

The power and potency of it nearly took my breath away. It rattled me. It might have lasted no more than 60 seconds but it lasted a lifetime. And as I stepped back, I could see in her eyes that she had experienced something similar. Though I am still not sure who among us was more surprised.

But I knew the answer to what was plaguing me.

I loved her.

I had for weeks. The problem was that I had been in a self-imposed emotional lockdown, unable to express it. You simply can't say that to someone you have just met. It isn't workable, not if you want them to stick around. The fact is, we had been talking for so long, every night, every day, for hours at a time, leading up to that first meeting, that I had developed feelings for her long before we had ever stepped within physical proximity of one another.

That's why I was so flat. I was protecting myself. I thought it was crucial to suppress any feelings I might have out of fear that I might somehow screw the whole thing up.

But it all made perfect sense now, holding her in my arms. I had fallen in love with her BECAUSE she was an attractive, down to Earth, charming, intelligent, professional woman with a strong family background and no real drama in her life. She was exactly the type of woman I wanted and needed. Exactly the kind of woman I always used to run from.

Exactly the opposite.

Of me.

What are the ODDS...???

This computer age we're in, and we were at the dawn of a new era of it then when it comes to 'Social Media'...it is one crazy thing. It makes the world so much smaller. It changes things.

Today, meeting someone on the Internet is commonplace, and falling in love with someone you meet online, but have never met in person before, is not something that you have to explain to people as much as you had to back then.

It happens. Much more frequently now.

But then? Things were so different. Rules for this kind of thing hadn't really been defined yet, because online dating and meeting was still in its early stages. I didn't have a regular 'e-mail' address that I used all the time, or a website. I didn't use eBay to make ends meet. I did not blog. I didn't check my computer every single day. And there were no iPads, Wi-Fi, 3G and all that shit.

I did not even have a cell phone.

Ultimately, like most people, the circumstances surrounding how I met the woman who would become my wife were as unique as I was. As unique as she was. As unusual and perfect and wonderful as all of the circumstances that had to align in the universe to bring the two of to that moment in time, to that place in the universe.

For me, she was my Betty Ross, a sort of foundational rock to the beast I had always carried inside me. Though I had tamed much of him on my own, she was the last piece of the puzzle that I required in my life to finally feel as if I was healed. Finding her at this time in my life could not have been a more perfect blessing.

For her, I was a man cut from an entirely different piece of material than any she had known before, and this intrigued her, and she saw in me hidden strengths I would never believe I had within myself. She had a way of bringing them to the surface like no other.

For us, there were no real guidelines, no rules as to how to proceed, because every aspect of how our relationship began was not at all 'by the book', and not just because we met online. A couple months into the relationship I had to travel to China for 5 weeks, then a few months later I was laid off, then I had to take a job out of state, and through it ALL?

We stayed together.

What are the ODDS...???

So in order to survive, to adapt, we just had to roll with quite a lot, Jennifer and I, from the very beginning, writing our own rules along the way.

OUT.

To Be Continued...

Sour

2011-10-07T08:40:00.000-04:00

An Odd Interaction

2011-10-01T00:31:00.000-04:00

Between my son and I in the kitchen for a few minutes, hanging out. Not sure if he was just tired or what...but he was definitely not sure what he was going for that afternoon. Still cute as all get out though...

I know...I'm a bit on the strange side. Oh well, it was fun for ME.

OUT.

Paths

2011-09-29T10:45:00.001-04:00

How EASY it is to stray from a path.

You know it occurred to me, that with all the distractions of the surgery, the Mission iPossible project and so many other things I have not really updated this blog or even my Facebook page with any recent pictures of the boys in AGES.

Strolling through the end of summer and into this Fall, I've been focusing so much on my surroundings, on the minutiae of the journey itself, I've not only lost sight of the path I am walking on, but have you ever noticed that you can often forget about the people who are taking the same journey right alongside you when (and if) you allow yourself to get like this?

It's a sad reality of humanity truthfully, but it happens. At least to me it does. I don't know about anyone else. I HOPE it does. I'd hate to think I am as super incredibly weird as everybody says I am.

But I GOTTA try to remember to come back to the things that matter more often.

These nuggets are important, but I do know why I sometimes avoid them. There are Truths inside some of the photographs and videos that I sometimes take of Bennett that I haven't...what's the word...I don't know that there is ONE word...I just know that even though I keep thinking I have made my peace with where Bennett is, with WHO is he, and where he is headed, I then suddenly realize that I haven't.

I remember a post of Elizabeth's some time ago, but to dig through her shitload of post counts of all of her wit and wisdom to find the exact one would take me forever, but it was about some painfully obvious 'scientific study' that concluded that parents of children who have or have had epilepsy, or disabilities, or something, are depressed.

Um...yeah.

But I remember reading the comments and I wanted to chime in but for some reason I didn't say what I was feeling, which was this.

I think that the sooner you can come to terms with the fact that your life is never going to be the same, the better off you are going to be. But I believe, and this is just me...I do believe that a certain sense of sadness will always be with you...no matter what. However, it can be manageable. IF you have a few weapons in your arsenal.

Weapons that serve your particular battle. Weapons like Faith certainly, for some folks, but I think even more key, or even related, is acceptance. I mean...if you think about it. Once you actually make friends with the Monster Under the Bed, is it really as scary once you get to KNOW it? It may still upset you that it is always there, it may still wear on you, and it may often bring you down...but there may be days when it actually is something you can learn to live with. Maybe even take it out to dinner, have a cup of coffee...cop a feel even.

For me, the more thought I give this, the more I still think I have to move past what was lost. I have looked at old movies of Bennett, something that I finally did, because I felt it was time to do so.

There is one particular disc I watched a few times, recorded in late 2008. It was the four of us, sitting around in the living room, the same one here that I am writing this blog in, in this leaky, falling-apart house where I also recorded Bennett having a ton of seizures. We were so happy, all four of us. Bennett was 11 months old, and he was walking around, a little stumbly, but doing it. He was saying 'Momma!'. At 11 months. He was bright-eyed and cheerful. Inquisitive and curious about his world and his surroundings.

I found myself wondering...was the tumor in there growing yet? Had it started? Was it like a balloon, getting more and more air, just waiting for the right sharp pin, a vaccination that was delivered 4 months later, to make it pop?

With a very tearful face, I realized I felt a sense of tremendous LOSS. And it dawned on me that this type of situation was something I have never faced before. This was my Kobayashi Maru. And something clicked in me. All this time I have been holding out this hope that Bennett was coming back. I looked back at some old blog posts about counting words, and checking at his development post-surgery, and fixating on the phrase 'Hi Daddy!' a lot.

A phrase that he could say, clear as a bell, before the surgery. A phrase that he still, as he rounds the corner on being 4 years old, he cannot say. In fact, if you ask him who I am from time to time, he may say 'Daddy!', but other times he might say 'Kee-kol!' or 'Mommy!' or even 'Car-ker!'.

I found myself using phrases in my writing like 're-wiring of his brain' a lot, and I very much expected, believed, hoped, that things were going to right itself with him. The cold, hard truth of it?

I believed, with all my heart, that since Bennett had a Brain Tumor and that we stopped his seizures cold with its removal, and since the tumor had not returned, that somehow he would start to become more like the Bennett he was before all of this shit hit the fan.

The fact is, the Bennett I knew, my son that I rolled around with on the floor and played with and had all these plans for, really is gone, and he is never, EVER, coming back.

And I think that my ups and downs and twists and turns have all been due, among other things certainly, because I have been fighting the acceptance of that for as long as I have been writing about his journey since his surgery. Or at least for many months AFTER the surgery.

I have been in denial.

The psychological evaluation that he had in July, which still had him in the 14-18 month range in most areas cognitively and measured his IQ at 48 was probably the thing that pushed Jen and I both into the cold arms of Reality.

The boy is nearly 4.

More than you can possibly imagine, I love my sons. I love my family. In so many ways I already, as the Father, feel like I let them down because of where I am in my Life, struggling like I am. All the baggage I brought with me. And now all of this heaped on top.

I swear...sometimes I look at them and wonder if they would be better off without me. And then a voice inside me says 'You know, your Bio-Father probably rationalized the same thought when HE left.' and I resolve myself even more to find strength and courage to make it through another day and find some good in it. Some good in myself.

Is it difficult sometimes to look at photos of Bennett occupying his time at the Washing Machine spin cycle and compare them to the photos of Carter getting on the bus for his first day of school? Yes it is. Two very different paths in life for two very different, two very wonderful, boys.

And yet they also walk the SAME path, alongside me.

I owe it to them both to work harder to get my shit together.

OUT.

Feeding the Beast

2011-09-26T18:02:00.000-04:00

It's funny what writing blogs like these inspires in some of the people involved.

Of course, taking an extremely long break inspires, from the readership, two main reactions from two very different groups. In one group it inspires concern. People wonder if I have slipped into some kind of Funk Zone. Am I back into one of my timeless depressions from which I have to work myself out? In the other group, the more casual reader, it inspires the act of moving on, as it should.

If you don't feed the beast, the beast moves on.

Whoa...that is one hairy mufuggin beast.

The fact of the matter is that I have slipped into something. No, not anything lacy and silky, though SingleDad is going to be very disappointed I'm sure, especially after I (hopefully) get to see the pic of his elongated body part he promised in the last post I got around to slapping together.

I've tried writing. I have at least 20+ blogs started and not finished. I simply can't get my thoughts un-jumbled in a way that works for me. And although I would like to place all of the blame on my lack of Blogification on 'The Thing' and my Tonsillectomy the fact of the matter is that yes, Virgina, lately I have slipped into something dark.

Murky and bitter, like I used to like my coffee. And my women.

Shit. My how it do happen.

The thing is, it isn't just one thing that is vexing me of late. It is many things.

Isn't it always?

Sadly, I have also discovered that Mrs. Blogzilly is in the same state of mind, and that is not a good combination. When you have both parents sinking in quicksand, the other one isn't there on solid ground to help pull the other out.

Man...I SO wish I was more like Cat and let things just roll off me. In every way. But alas...who can be?

At first, when I sat down to write this blog, I was going to try something funky. I was going to write a list of the topics that were screwing with my head. Just the topics. It was called 'The Shit List'.

It was a kind of Free Associative Bullshit List Making (I just made that up...gonna take off like Facebook and make me a millionaire and solve ALL My problems!). I was not going to comment on the why, just the subjects. Maybe I would tackle talking about them, but only AFTER I finished my mufuggin Faith opus that I started before my surgery and get some Fruitless Pursuits posts and Mission iPossible posts in the pipe and finished...both of which I have fallen behind on because of the abyss I find myself lost in again.

But then some things made me change my mind.

First, I realized that a list like that was actually kind of pointless. Because when I started to write it I realized that whatever I wrote, at least most things, could ALSO be placed on a list of things that I am thankful for, something I had also thought about doing recently because I know that my good friend and partner-in-crime Heather says she wants to do that for her upcoming birthday and it is also something she does quite often on her blog Little Wonders.

So what does that mean?

It means that perception is everything, doesn't it? Attitude is everything. And somehow, someway...I have GOT to figure out a way to control and manipulate myself (hee hee...he said 'manipulate myself!) to manage my perceptions. Because this entire journey, and the ups and downs of it, is murdering me.

Elaine, who writes Our Sweet Sophie, one of the people I discovered very early on in all of this, wrote something a while back, something that has stuck with me for quite a while. I think about it almost every day, as I struggle to keep my head above water.

She wrote this about her daughter, Sophie, whose behavior problems have been pushing her to the brink.

'We are living our lives the best we can. She tries our patience to the fullest extent almost on a daily basis. She pushes me over the edge to where I say and do things that I regret so much that it hurts my soul. And at other times, she can make me so proud that I cry tears of pure joy.'

It is exactly, almost word for word, how I feel about my son Bennett. Maybe in regards to how I feel about my entire life.

So there you go.

There are a lot of good things in life to celebrate, a lot to be proud of. I know this to be an absolute Truth. But I can see that ever since Bennett had his evaluation, Jen and I, despite having experienced some highs (that I will talk about this week) are experiencing some of our worst lows in quite a while.

You do realize I can't stand this about myself right? It is hard when you deal with the ups and downs of what is, frankly, mental illness. And although it pains people who care about me to hear me say that out loud, I don't mind. It doesn't bother me to use that phrase.

So I have some depression, some anxiety, some other aspects of me that I have to 'manage' that make things harder for me living day to day than, say, John Q. Asshole? And those things, technically speaking, are classified as 'mental illness'.

So what?

There are a TON of people, and especially men, who are super embarrassed about stuff like that, thinking that somehow, some way, admissions of that kind of thing are signs of weakness. Or, God forbid, saying that you go to a Psychiatrist, which I do now and have off and on for years, because it will make you appear like you are as fruity as a nutcake and everybody will think you are crazy with a capital 'K'!

I believe the opposite. I believe it takes a great deal of strength to talk about those things. I think it takes courage to admit those things. I have a lot more respect for a man who is prepared to talk about the fact that he cried or he experienced this or that emotion or dealt with this or that problem than I ever do a man whose only expressions of emotion come when HE does or when his favorite wide receiver crosses the goal line.

To me? That is just not the way to show the world that you are made of quality ingredients.

FYI...I spent a good portion of last evening and half of this morning sobbing. And I mean the kind that makes your face swell and your head hurt. Nyah, nyah, nyah...

So that's where I am right now. Yeah...the over-enlarged holes left behind from the humungous tonsils are still healing, VERY slowly and yeah, times are REALLY hard right now in Casa de Lilly. REALLY.

But I need to get back to Blogging, somehow, because as several friends have pointed out, when I do NOT do it, my brain junk backs up, and since my Ulnar Neuropathy is something that prevents me from using my heavy bag (or even picking up a glass of water sometimes) to unleash some of my stress, I need an outlet.

And this be it.

OUT.

Lando the Lost

2011-09-20T16:44:00.000-04:00

Calrissian said it best.

'Yes he's alive...and in perfect hibernation.'

Barely. If you managed to sneak a photo of me of late, I might actually be on my back, hands up, palms forward, with a grimace on my face, awaiting transport to Jabba the Hutt. I feel frozen.

Lots of reasons why.

And frankly, I am not really ready to take a bite out of it yet. You ever get like that? Any of you that blog I mean? You just have a whole shitload of stuff that you have that is jacking you up and you want to release it, but you just can't and until you do there just isn't anything you can really do in THIS space that will satisfy?

It's freaky.

BUT...I get e-mails. I even get calls now. People thinking I may be dead or something. Throat does feel like shit though I can tell you that. Went to the ENT yesterday, and he explained it to me. Gave me the skinny. See, the Lord did not see fit to give me exaggerated height, big feet or an elongated...sense of self. No, the only enlarged thing on me I got, other than my gut (well, actually, I think that one is MY fault) is an over-sized set of tonsils.

SO large, says the ENT, that the holes he cut are still in some earlier stages of healing from the 'inside-up' as he called it. Which is why there is still pain, still discomfort, still a fucked-up burned flesh taste in my mouth and a generally poor disposition.

And he tells me that it will still be quite a while for this whole shitty mess to heal up since, his words...'You have, well, HAD, some of the biggest tonsils I've ever seen.'

JOY.

And since I am feeling generally crappy about my pathetic existence and where I am in LIFE overall after having turned 44 yesterday, or rather...where I am NOT in LIFE...I am going to show why this WHOLE thing started in the first place.

Now, you don't HAVE to look...that's the beauty of it.

But I am going to post the photos of what I call 'The Thing' that was stuck in one of my tonsils for days until one afternoon, and I can't remember exactly when this was but it was maybe last winter, I used a bunch of menthol stuff and other techniques you do NOT want to hear about to get myself to gag 'The Thing' out.

If you click the images below, you will see it.

BUT THAT IS YOUR DECISION.

It was not totally soft, not totally hard either. When I squeezed it, it would not break apart. It had mass. The ENT, when shown the photos later, said it was a tonsil stone that had begun to get fungal/bacterial. And you do NOT want to know what the smell was like. It was...unfathomable.

It was this unholy terror that got me seeing the aforementioned ENT and on a path toward discovery of my LPR and the fact that I had these giant tonsils that, he told me when I first met him, had 'gills'. The gills just kept getting bigger, because stuff like 'The Thing' would get trapped in there, and stay small at first...then...grow...if I did not expel them.

Yup...welcome to HELL, Fish-Boy!!!

But the Gilly's are gone now. Hopefully that won't be happening again.

I will just be glad when I can yawn and it doesn't feel like someone is sticking a fist down my throat.

OUT.

Bones

2011-09-11T13:55:00.004-04:00

OK, so I am swiping again. I wrote this a little bit ago over at Mission: iPossible, as part of a post to get those folks caught up, but I wanted to share THIS part over here, because I know the two audiences aren't always synched up.

Like I mentioned there, I'm not done recovering from my Tonsillectomy. I still have some issues in my throat, some pain and some kind of discomfort and weird feeling and swelling on one side. Time to go March with the ENTS.

But the MAIN thing I wanted to be sure I mentioned over here is the news about Sam, one of the earlier Mission: iPossible iPad Recipients, who is recovering from a broken femur in the hospital. His Mom, cerealgirl007, who you can find over at her blog Cereal World, could use some encouragement, as she is stuck 24-7 all by herself over 14 hours away from her home at the Children's Hospital, and poor Sam is in traction for at LEAST three weeks and has a LONG road of recovery ahead of him.

We gotta show some support, that has to be BRUTAL!!!

Anyway, I hope you are all having a fairly good day, remembering the events that happened ten years ago in your own way.

My own thoughts I do have about 9/11, but I've just got too much to do today to write about them, and well, I may NEVER get to them, but maybe I don't need to. If I can, I will, and if not I'll leave it to those far more qualified than I.

OUT.

Mr. Clean

2011-09-06T15:15:00.001-04:00

Got word from the Neuro-O today. The MRI was clean. No tumor regrowth as we had feared. I did not drive up there, we canceled the appointment late last week and decided to call in for the results, because I knew I would still be taking pain meds because of the throat and they said it would be OK.

For some reason they are insisting we still make an appointment. When I am up to it I am going to call and 'debate' that. There just is no real need this time, so I want to argue for a pass this time around. I need to rest, and Jen has a leg surgery coming up, there needs to be some kind of a 'One-Time' release or something.

Anyway, I'm not at 100% and will write more soon but wanted to at least share that bit of news.

OUT.

It's ALIVE!!!

2011-09-01T22:30:00.002-04:00

At the suggestion of a dear friend, it has been suggested that I get on here and let everyone know that I am alive and kicking.

I'm not doing much kicking. Or swallowing without pain. Or talking without aching. But I am alive, and each day gets a TEENSY WEENSY bit better.

Yeah...I am a little bit worried about tomorrow. I have to admit to that, and perhaps that mental element is also keeping me from writing as much as the physical elements are keeping me from writing. But as my dear friend pointed out, there are expectations that people have when you have blogs like this, and I have a responsibility not to leave folks hanging.

And so I am sorry for doing that.

And consider yourself un-hung for now. :)

I'll let you all know in a few days when I turn the corner into Much-Less-Pain-Ville.

OUT.

And Now They Are Gone

2011-08-27T15:45:00.001-04:00

So I used to have tonsils. Now I don't.

Yesterday I had a Tonsillectomy to have my throat testes removed. I haven't had surgery since around 1992 I believe, or it might have been 1993, I am not 100% sure.

I know it was during the time I was working for IKEA in Baltimore, in between the time I attended St. Mary's College of Maryland for my B.F.A. and The Savannah College of Art and Design for my M.F.A., so that puts it in the first half of the 90's that much I know for sure. That's how I attempt to remember things, betwixt significant milestones in Life.

And although I have no immediate recollection whatsoever of the year, I could probably find it if I actually felt like spending some time looking. What's that mean? I have typically written like this most of my young adult life, just not publicly. I have kept some kind of a journal, in some form, with a few years gap, since around the age of 13 or 14.

You know...'Dear Diary, got a zit on my back today, kissed a girl for the first time, got tied up and left in the basement', that kind of thing. Just your typical average stuff that happens to you when you're livin' life in the good old U.S. of A.

What a difference 17 or so years makes though.

When I had my Appendectomy, an emergency one I might add, I had to admit to the anesthesiologist and the Doc who was going to be cutting my guts open that I was high on marijuana before I came in to the ER to be admitted. And coming out of the anesthesia was a BITCH because of that and because I was such a heavy smoker.

This time around, I had to admit to the anesthesiologist and the Doc who was going to be snipping out the smelly mouth balls that I had started taking Fish Oil supplements on Tuesday when I found out via my History and Physical that my Cholesterol and Triglycerides are high. I was terrified that my surgery might get canceled when I found out those were on the 'No Takey' list, but since it was only three days, it was cool.

And THIS time, since I have been Cancer Stick free for what will be three years this coming December 1st, I woke up from the anesthesia like I just had a quick nap, was alert and attentive and everyone in there was like 'WHOA, are you sure you are OK?' and I was as surprised as they were but not only was I fine but I wasn't nauseous I wasn't that woozy and I barely felt bad at all.

Of course, it was hard to speak, but not too bad, and I was sore in the throat. But it wasn't the horrific pain I thought it might be.

Then today happened.

I feel like I have swallowed a bowl full of crushed glass. I can barely talk at all. I guess the honeymoon is over and all those mixed drugs they gave me from yesterday have finally worn off for good.

Oh well. Not like I'm not used to a little pain. Looks like I'll have to be taking it easier than I thought I would be.

But the whole recovery scenario is WAY better than it was the last time. My Mom is here. Back then, she lived across town, and she wasn't with me 24/7, nor did I have a wife or anybody else. I was pretty much on my own and a LOT less mobile. I didn't have any Internet, no X-Box, and Cable TV sucked. I don't even think I had a cordless phone.

Though admittedly my BRAIN was probably better served at the time, because I do recall a stack of books I had purchased that I had been meaning to read and burning through every one of them and getting more. I can't remember the last time I picked UP a book unless it was to do research.

Though even with all the stuff at my disposal, my Mom wants me taking it easy, and so I am. What is most maddening to not be WORKING, because I am generally a workaholic.

In fact the second we got home from surgery there was a box here for my home business and the first thing I did on instinct was walk over and pick it up and went for my pocket knife to go examine the contents. She of course took the box and made me go sit down.

I guess that was the adult equivalent of a time out. From then on I complied. Last thing in the worlds I need my kids to see is their Dad get a spanking or something at age 43. :)

I know I promised to do the Second Trilogy this upcoming week. I still HOPE to, but we'll see how I feel. I don't want to take any unnecessary risks, and exacerbate the situation. I'll do the best I can and update you all when I get a chance.

OUT.

We Interrupt Your Regularly Scheduled Dose of Spiritual Creaminess

2011-08-25T19:30:00.001-04:00

My total bad.

I know so many of you were hoping I was going to wrap up this journey by week's end. So was I quite frankly. But a funny thing happened on the way to spiritual enlightenment. When I made the decision to go from one Massive Blog to a split-entry format, I started adding some stuff in. As that occurred, the whole process evolved.

As that evolution occurred, last night I had an epiphany and needed to add some things, it was important to me. So I had to expand the series from V chapters to VI.

OK, I admit it, I was just trying to be more like George.

BUT...I am about to get my throat gonads yanked out tomorrow, and so there is just no time to write that inserted fifth chapter in time to keep everything a-flowing properly, so I decided to save the Original Trilogy for next week. Consider this past week, Episodes I through III, sort of like a Prequel Trilogy with no Jar-Jar.

Which KINDA works, when you think about it, since it did end with a fall from grace and a fairly unhappy ending, although I did NOT get a cool black suit and a red light-saber, which ROYALLY pisses me off, since I thought that was mandatory once you start down a Dark Path.

I guess I did not read the fine print.

So, if I am still alive after the surgery I can finish this all up next week and publish it then and give it the time and the care it deserves. Besides, the painkillers may actually make me decide to toss a few Ewoks in there...and we all know that EVERYBODY LOVES EWOKS!

OUT.

Meighan

2011-08-24T15:00:00.008-04:00

(This is Part III of VI of a series of entries that chronicle my experience of Faith, from my early understanding of it as a kid and my acceptance of it as a teenager, my rejection of it as a young adult and my struggles with it as a parent of a child with multiple disabilities, and what I have come to know and appreciate about it through the acts of others.)

Part I of VI: Richard
Part II of VI: Mark
Part III of VI: Meighan
Part IV of VI: Jennifer
Part V of VI: Bennett
Part VI of VI: You All, Everybody

It's very strange to write about a former relationship on a blog, especially when you are married.

You walk a very dangerous road when you do this. Very dangerous.

But I've talked it over with my better half many times, and what makes her my 'better' half is that she is cool with it, because she knows I can do it respectfully. She understands that all parts of my past have worked together as pieces of the puzzle that make up the person who sits here today. I consider that an admirable strength of character.

Back when I first started to get acquainted with the Catholic church, back when I first met Meighan, our relationship was fairly superficial. We dated, but it was always on again/off again, and she was always the one flicking the switch, which of course drove me completely crazy.

She was a good friend, and we were kids, but I loved her dearly, and she said she loved me. Though it was not 'love' in the sense that I understand love's meaning today at the age of 43.

Besides, I was one of many, many boys competing for her attention. Meighan was always the center of it all in any given situation, which was exactly how she liked it. She commanded a room when she was in it and I'm sure she had this sort of 'hold' on a lot of the boys of the St. Margaret's Youth Group.

Frankly? I was most likely fairly insignificant to her a lot of the time in those early days. She had a quiet arrogance about her, she was cocky, self-confident. She knew that she was the bomb. That's fine, to me and a lot of the guys I talked to about her, she WAS the bomb.

And like I said...we were just kids. I was a lot more focused on other things at the time too. I was very arrogant myself. I liked to date other girls and I had an Ego that was completely over-compensating for inadequate self-esteem, the shrapnel from years of being ripped to pieces by my Old Man. So while Meighan might have been one of the few people who had an ability to hold me in the palm of her hand (and crush me with it from time to time), it isn't like I didn't do my fair share of heartbreaking.

Though for a brief period of time, we did make a connection that had a lasting impression on me, and I believed it did on her. We expressed a great deal of our feelings toward each other. After that we parted ways and decided to remain good friends, and she helped me study for much of my Catechism classes and helped me achieve my goal to become a Roman Catholic.

That was 1985.

Not long after I was baptized, something happened to Meighan. Something terrible.

Something even to this day I have only received conflicting information about, and because of that I hesitate to say anything more than the fact that she had a medical problem that resulted in something very severe.

She had an 'incident', for want of a better word. Maybe a heart attack, which is what I always believed. Though I have never really known for sure.

As a result of this incident, she ended up in a coma.

I visited her in the hospital, with as much frequency as I could, then less, then less, but according to her Mom, she seemed to react when I would talk, though I could not detect it, so I did what anyone would do...I talked, or I read the newspaper. She also, in recovery, reacted to an article her Mom read read about me in the newspaper.

Some time later, after she had come out of it, we tried to see each other again. This time our relationship lasted a lot longer. She was VERY different this time. She could function normally, not disabled in any way, though she had a few memory recall issues. And she seemed a lot less self-centered.

Things were going remarkably well, and different than our typical M.O., and I actually thought we had a shot this time out. But as always happened between us, eventually, she broke my heart and dumped me.

And this time it was BRUTAL. I never saw it coming. Complete blind-side, because I really thought that her incident had changed the way she saw the world, and I hoped that the incident had changed the way she saw me. I was a fool.

Still, like I said, I kept the Faith. I mean...it's just a girl. There would always be another.

Meighan then disappeared off everybody's radar for a LONG time. Nobody seemed to know where she disappeared to, and it wasn't until the summer of 1989 that my path intersected with Meighan's again.

As was our typical Modus Operandi it was not long at all before we started to get entangled.

She was a bit more Meighan this time. Different still, but more of what I remembered. I was WAY more cautious of my feelings this time around though, that much I can promise you, because by now I was a little older, a little more 'seasoned', and I had grown to be be sick to death of always getting dumped by Meighan every time we went down this road.

Maybe I was just STARTING to learn a thing or two about myself.

When we started this round of our relationship, something was VERY different.

There was a vulnerability in her I had never seen. She was scared. Apparently some guy she was seeing was not treating her well, possibly even some physical abuse. I think she was coming to me in the hope that I might help her, because I was always there for her in the past no matter how bad things ever had become. She also was out of medication, stuff she needed for her condition.

My Mom, always generous, always the first to help anyone, out of her own pocket, bought her three months worth. My Mom also offered her the opportunity to stay at our house (I was living at home at the time...it was summer and I was home from school). Meighan declined the offer to live there full-time, but she was there often and it was a terrific summer, back when summer actually MEANT something.

One night, Meighan and I went to go see the movie 'Batman', that first one with Michael Keaton, and when we came back, as we sat in my black Nissan truck at the lake, we just talked, and she asked me something that almost made ME have a heart attack.

Meighan asked me for a commitment.

Meighan asked ME for a COMMITMENT.

This was huge simply because it had never happened before. It wasn't her style. I was always the one doing that. But I hadn't done it all summer long. I didn't want one from anyone else, and I certainly didn't want one with HER. How in the WORLD could I possibly TRUST it?

I could not believe my own ears when I declined.

So help me God, I was too stubborn and too stupid and too scared and I just said no that I wanted to wait. Wait for what? Who the FUCK knows? I was a complete and total fool.

One day soon after I woke up to discover that she had left town. I called my friend Robb to try to find out where she was, and he didn't know. I tried to find her, tried to call, but she wouldn't return my calls no matter where I thought she might be. There were no cell phones then. No Internet. And I had no way of finding out where she was, where she might be living.

After a week or two, I had to give up and go back to school.

After I was in school for around a month or two, I was seeing someone else and it was going fairly well. I was with her one Saturday morning when the phone rang. It was Robb. He was making small talk at first, but his voice sounded very weird. I asked him to tell me what was up. He said that Meighan had decided to go back to Georgia and move back in with that same dude who had been abusive to her, and that the day after she got there she had another heart attack.

'Aw shit Rob...why'd she DO that? Where is she now? How is she? Which hospital is she in? Is she in another coma?'

'No man. Ken, I'm sorry dude...She's dead.'

I asked about the services, said I'd be there, and hung up.

I laid back down. Silent. Shock. Disbelief.

My girlfriend asked me what was wrong. I told her I just found out a friend of mine had died. She said she was sorry. I said it was OK. She asked me if I needed to talk about it.

I said I did, but not right now. I just stared. Speechless.

Later, she asked me if I needed her to go with me to Meighan's funeral Mass, and I said I didn't, and she was understanding of the fact that I needed to go alone.

I did.

When I was there, I kept to myself, I didn't speak to my friends from St. Margaret's much at all. I knew that I would be unable, that if I tried to say anything, my thin veneer would shatter. I had not cried once since I had received the news, and as I sat and listened to the Mass and looked at the images of Christ and the Saints in the church, none fell still.

I just became more angry. My sorrow became darkness. My pain began to twist inside me.

I was angry for a lot of things from my childhood that remained unresolved and for many other evils unexplained. I'd had enough bullshit promises and all the hurt and the struggle. If you were supposed to be so damn good, then why was my life so FUCKING hard? And why her?

I resented God for taking Meighan away from me, from her friends, from her family. I swore that I would never have anything to do with Him or His Church or anything involving Him.

Ever again.

So I turned my back on Him. I rejected Him. I refused to accept the Eucharist. I had gone to that funeral Mass so that I could say goodbye to Meighan, and instead I said goodbye to God.

I got up, walked out of the Church, got in my car, drove the 2 hours back to school and I never voluntarily went to another Mass again.

If Richard had been there, he would have reminded me of something.

'But beware the Dark Side. Anger, fear, aggression. The Dark Side...are they. Easily they flow...If once you start down the dark path, forever will it dominate your destiny. Consume you it will...'

It goes without saying that I have carried with me that anger and fear, that aggression, as well as shitloads of guilt over her death, and many other things, ever since. Guilt that I have never been able to purge.

What if I had said 'Yes' when she asked me for that commitment? Would she have gone to Georgia? What kind of an outcome would she have had? Would she have stayed alive? Is it ever as simple as that? No one can ever really know.

This darkness, this...beast within me, became much worse after that day. My internal rage, and the hate it was fueled by, left a lot of people, a lot of good people, unfairly confused and tattered in my wake. I can never really make up for that.

There have been some, along the way, who were spared. Some who were able to look past the scars and the anguish and the fear and even soften me a little. Maybe even get through some of those cannon and fortress I used to keep most people away. Those people know who they are and even though we may never have turned any final corners together some of us remain friends today, maybe wiser and hopefully better people from the experience.

But my Faith?

A twisted, tangled mess, left behind with a beautiful person who was taken from this world far too early, by a man whose spirit was broken.

For twenty years.

OUT.

To Be Continued...